This post is the one I have feared since the blog began. Turning it over and over, wondering what it would be like, when it would arrive. It’s time now.
May bravery mark my rolling over this most dreaded threshold, because true”stepping over” can no longer happen. It’s time now. I’ve tried so hard. But now it’s time.
From now on, when I head out, I will be in an electric wheelchair or on a scooter. I will use a walker to make my way gingerly around the house and see how long that lasts
This moment has come in slowly and on its own time. Strewn with the burning wrecks of walking a little bit better one day or barking at my loving wife for some stupid trifle another day, it loomed and heaved like big waves on the ocean. Far off shore and then suddenly upon me, the waves never relented. Until today.
A month ago, no one would have identified me as being “in a wheelchair.” Using one at airports and on long walks during vacations did not qualify. In conversation, I would report losing half my walking ability each year. I could manage some steps with my stylish canes. I spoke of trying to plateau with my private workouts.
No more. It’s over. My recent, brief flirtation with the much better stability of European crutches (a bit like the old polio crutches) failed to suffice due to neuropathy, the same issue that ultimately doomed the cane. After about 50 agonizingly slow yards at most, my legs and energy vanish, leaving me near falling and drained for hours. I can still use the crutches for short hops. But it’s time.
It’s time to start researching the best devices and improvements for this stage where, thank God, I can still transfer from walker to chair to bed to bathroom. And where my right leg still works well enough to get me slowly up the stairs in our house.
It’s time to wrap my mind around the image of the wheelchair versus the cane. Having read a lot and spoken to those who know, the news is not great. You get shorter. Some say you disappear. No one else is at eye level; they all stand above your gaze. You resent people not sitting with you: “How can they not see that I am down here?” Cocktail parties bring a toxic mix of anger and sadness. Unless you buy an expensive elevated chair, you won’t ever stand eye to eye with anyone again.
It’s time to heed the wise advice of the occupational therapist: focus on getting to destinations by the easiest route and conserving energy, rather than walking for its own sake.
It’s time. Time because ignoring what time it is now would be to risk the kind of fall I had last month, when I broke five ribs. My sister-in-law Claire, a physician, told me and Lisa that it can certainly be too late to go to the chair. Then she asked kindly, “Can it ever be too soon?”
It’s time to gently tell my friends and loved ones that for now, I need to focus on inhabiting this transition. I do understand that research is advancing and that I could someday improve. But in order to move forward without a repeat of the violent lurching between hope and fear that marked 2015, I must live inside today, tomorrow, and the next day. The long term will take care of itself.
It’s time to move past my longstanding fear of this moment and past some charming recent additions. Adding insult to injury, new leg spasms have arrived, as if to punctuate my decline in walking. They attack when I attempt to stand up after sitting a bit, shaking my body uncontrollably and catapulting me backward into my seat or my bed. As I move through the fear of the wheelchair and toward acceptance of the spasms, I hope that soon I will be able to cut down on the crying. Did you ever notice that lots and lots of tears taste like a perfectly chlorinated pool on a summer day when you were young? I fall to sobbing when a song or an image presents an opportunity to release more of my seemingly endless tears. This grief will run its course, slow or fast, long or less long.
It’s time to join ranks with more seasoned cavalry officers–the ones with years in the saddle. I will look to them for wisdom and comfort. I know I will find some there.
Most of all, it’s time to draw strength from the clarity; the threshold has finally been crossed. It has happened. It. Is. Time.
I will see you on the other side, and if you see a twinkle in my eye or hear a lilt in my voice, please laugh with me. On other days, please tell me you are sorry that this is where I am right now. I will tell you that it is okay. And it is.