Peripheral Neuropathy - A Special Anniversary...

Not many of my friends, or even my extended family, know how hard this past year has been for me. But it has been. It's been a struggle like none I have ever before known... but even through the pain, the past year has also been filled with lessons I hadn't even realized I had needed.

It was exactly one year ago today when my legs suddenly stopped working. When it happened, I had felt a few slight 'tingles' happening in my right leg, off and on, for a couple of days but I had brushed them off to 'man, so annoying... I hate it when limbs decide to fall asleep', but I felt absolutely fine, otherwise, and so on that evening one year ago, I took my pup for a beautiful winter evening walk. It wasn't until we were back at home when the tingles returned in my leg and moved into both legs before I started to get worried. The tingles slowly overtook my entire body and I felt like I was going to faint so even though I was worried about being laughed at for going to the hospital for something that couldn't even be seen and that I didn't have a clue of how to explain... I finally let my husband, Enz, talk me into going to the hospital.

I was able to walk into the hospital but Enz had to check me in because I suddenly felt that if I stopped moving I would fall down. It was only a matter of minutes before the staff had rushed me into critical care and maybe only about five minutes after that when the doctor had started examining me and asked to see me walk. I had been sitting on the stretcher, my legs over the side and I pushed myself off with my arms, expecting to stand as I had done millions of times before... but this time, my legs didn't stand. Instead, they collapsed beneath me. Fortunately, both Enz and the doctor were quick to react and catch me before I fell completely to the floor.

And that's when the crappiness began.

In that instant of collapse, my legs were paralyzed and my whole world changed. I had just about every test imaginable during the next four hours and the doctors were stumped. I was rushed immediately into X-ray followed by CT scan followed by MRI followed by Spinal Tap followed by more X-rays, sensory testing, motor-function testing, nerve-testing and bloodwork out the wazoo!

Ultimately, I was admitted to the hospital due to suddenly being paralyzed in my legs with no feeling or movement whatsoever. It was a terrifying time, not knowing why it had happened or whether I would even ever walk again. I began physical therapy the day after I was admitted but for the first few days we had to focus on my arms and making sure they would stay strong in the case I would be in a wheelchair from then on. I think being carefully prepared for that prospect by the therapist was maybe one of the worst moments I had; it was something I didn't even want to think about. I tried not to complain. I tried to accept. I tried not to let myself feel how much it all just totally sucked. I wasn't sick. I wasn't hurt. But my legs weren't working or feeling and my body just didn't know how to physically deal so I was stuck in that hospital bed.

It was on my fourth day in the hospital when I felt the first faint touch of aching in my ankles. They had been bruised and swollen from, the doctors assumed, having rolled when my legs had first collapsed but this was the first actual feeling I had felt in four long days and I was actually grateful for the pain, even though it was so slight I wondered if I was imagining it. Later on that same day, when the physical therapist came I was able to stand with her help as well as the assistance straps I had already become unfortunately used to (like in the photo below). This time was different though. This time, I could feel that there was a floor beneath my feet. I felt the cold. I felt the hard tiles. I just barely felt, but I felt. And in that moment, I suddenly felt something else again, too... I felt hope crawling back into me. I had been rolling the halls in a wheelchair to keep my arm strength up but I suddenly knew that more was still in store for me.

NOT an actual picture of me but this
was exactly how I learned to stand again.

I had finally been diagnosed with a sudden onset of Peripheral Neuropathy that had affected both sensory and motor nerves in both of my legs but even still to this day, have no idea of what had caused it. I stayed in the hospital for a week before the Neurologist decided it was time to transfer me to an inpatient physical rehab program at another hospital. I begged to come home instead and only because our house is a core-floor was it deemed safe enough for me to manage with therapy coming to the house. The relief I felt at being allowed to come home, well, I can't even describe it! I was getting no rest in the hospital and I knew that being home would serve me better than more time in hospital.

Over the months I slowly made progress. I had graduated from hospital bed to wheelchair to walker within about three months and during the next seven, or so, months I slowly grew in confidence to walk around the house without the help of holding onto walls and furniture for support. On the flat, I was fine but hills and stairs were obstacles my legs just couldn't tackle and still, one year later, aren't yet quite up to the task. Even now, if I hit an unexpected uneven footing... I stumble. If I try to walk up or down a hill... I wobble. If I try to do stairs... I falter... badly. I have started climbing the stairs like a ladder so I am hoping that through repetition my legs will become accustomed to the motions and soon I will have that darned stubborn obstacle overcome very soon! I am incredibly proud to say that I can now manage walking mostly on my own and can even do a very light jog at times which is HUGE!!! The fact that my legs can keep up with moving as I ask for littel bits (no matter how slow) now gives me hope for a FULL recovery. Even though my Neurologist is trying to make me accept that where I am now in my healing may just turn out to be my new 100%, I now see that reaching for 110% is not out of the realm of my possibility!

Even through this whole horrible experience I can still see how fortunate I am. My mom and sister were with me in the hospital every day, helping me not only stay positive but also helping me to remember and understand what the doctors were saying when my brain was too filled with fear to
absorb it all. Enz helped me in ways I thought might just have been enough to override the 'for better or for worse' promises we made when we married twenty-one years ago. Even Enz's dad stepped up and moved into our house to take care of our Greyhound, Day, while I was in the hospital so Enz never had to worry about being able to get to the hospital while I was stuck there. I am fortunate to have the incredible support system I do and I appreciate more than I can even begin to put into words.

One year ago today my legs stopped working.

Today... I can walk, mostly unassisted. I can , at times, jog lightly on the straight flat. I can climb stairs on my hands and feet/knees. I can walk up and down hills, with only an arm from Enz for support rather than him having to walk backwards in front of me holding my hands like a baby just learning to walk. Yes, I should still be using a walker when out and about in the real world but pride is the only obstacle I really still have left to overcome... I'm still working on that one.

So, what did I learn?

I learned that humiliation won't actually kill me. I thought I had known embarrassment in my life but I very quickly learned that embarrassment is nothing... until a toilet becomes necessary with suddenly paralyzed legs. That's when I learned that humiliation can hurt a soul physically, and not just emotionally. But I also learned that humiliation can be a good teacher and is actually good for cultivating empathy.

I learned that patience is not my friend but that heeding it really can and has helped. 'Time heals all'. We've all heard the saying but I'm not honestly certain that, in my case, it really rang true. Sure, time can smooth edges and dry tears... but scars, both seen and unseen, remain on our beings. I've been told maybe a thousand times this year to 'just give it a little more time'... but time takes patience and patience is getting harder and harder to come by.

I learned fear and just how far that fear can push me.

I learned that hiding makes everything harder. I hid my tears. I hid my fears. I hid my pain. And maybe worst of all, I hid myself... from friends, from life.

I learned disappointment in my every set-back along the road to healing.

But best of all...

I learned to believe in myself and all that my body and mind are capable of. Sure, I'm still in the work of healing but I am as far as I am in that healing because I have learned to believe in the trust that I will heal.

And so, today I celebrate! It is the anniversary of one of the hardest days in my life but it is also the anniversary that marks the day I started the fight back to healthy.