When I started researching post-Rehab exercise options in 2013 I looked at a gym’s website and clicked on “ Stroke Clinic.”
Sigh. It was for people wanting to work on their swimming form, not for brain injury survivors like me.
I guess I only have one kind of stroke on my mind these days, which is why logic took a vacation. But last week there was an encouraging sign when I saw the Physiatrist to hear about my not-bones.
We were discussing whether I should get an MRI of my shoulder. (I opined strongly that it was unnecessary and was ultimately successful. I am my father’s daughter – my persuasive power is not to be underestimated.)
Do you have a clip? She asked.
No, I replied, tipping my head downward so she could see my headband. It’s just elastic.
After a few minutes I was like, Oooohhh – you meant an aneurysm clip, like in my brain! I thought you were asking what was I wearing in my hair.
Bahahahahaha!! My bad. I misunderstood the question. My POV (point of view) is heavily colored by my injury, but not always. 🙂
It was a good visit. I was glad to get a good report on my x-ray results last week (my bones are good!) and I hoped to get a similarly optimistic professional opinion on my soft tissue. This opinion, however, was not forthcoming.
I cannot say that I received medical clearance to continue exercising. I did, however, get a good dose of perspective from a doctor who earned my respect as a physician, athlete, and a person in less than an hour. Plus, she didn’t say, “No.”
She’s concerned that I’m pushing it. Admittedly, I am pushing it. I see my Trainers 3-4x/week, and I’m concentrating on building muscle, “running” stronger, longer, steeper, and faster. Trainer D doesn’t know about the “faster” thing. He told me to leave the speed alone, but I don’t think he really meant it. Anyway, Coach R knows, and I’m taking my 0.1 increment approach. I’ll tell D after I reach my next milestone. That’s how I roll.
She saw that I had basically shaded both sides of all the pain figurine diagrams on my questionnaire, and I guess that was a red flag to her. Two years ago, when the hemiparesis surfaced but I couldn’t find any relief (this was prior to acupuncture) I had accepted a certain level of pain as inevitable and toddled along as best as I could. Her concern is that I might see some gains now, but I might pay for it later.
Then came the bit about how substantive gains come early in Recovery. She said 18 months, whereas I’ve most often heard 12. Either way, I’m obviously waaaay beyond that (3.5 years).
This isn’t news to me. It wasn’t a shock like the first time I heard a POV that was less optimistic than I had hoped. But it still feels like an elephant sat down on my heart when I get an opinion like this.
So how we left it was that I was supposed to consider scaling back. Let me say again that she’s an athlete – I sensed zero aversion to exertion – she was just cautioning me bc of what she’s seen personally and professionally.
Well, I considered it. And I’m not stopping. Of course I would have loved to have received medical clearance to exercise, and still advise people to do so, but midway through the appointment I gauged the situation and concluded that I would not be able to bend this doctor to my will. So I abandoned my plan of trying to force the issue.
Again, she didn’t say, “No,” so I’m using my own judgment here since nothing is growing in my brain that shouldn’t be. As I told Coach R prior to Oregon as part of a heartbreaking conversation re. emergency preparedness, My scans are clean… I will not be bleeding again, and in that sense I am comfortable with the level of medical assurance I’ve received thus far that exertion is fine for my brain and my body.
Apart from the brain-related risk, the other huge issue in my mind is that every medical provider I’ve seen on the East Coast has a very different POV from those who treated me in Portland. No one here saw me when I first got sick. There has been a lot of emphasis on death and dying (not just of brain cells but of me), and my parents were told I was half-dead by the time I made it to surgery.
By the time I went home from RIO (3rd Hospital) after a month-long crash course in being awake post-AVM and stroke, my PT said, This is like working with a completely different person.
Over three more years have passed and I’ve come a long way. And the reason I’m pursuing Recovery at this pace is bc I’m not seeing negligible gains, I’m seeing big ones that are crucial to the lifestyle I want to lead and the calling I’m finally admitting is mine. As I’ve gotten more of a handle on just how bad the situation was I am increasingly convinced that there is an extremely high degree of Divine Intervention going on here that makes all of this uncertain. Medical people have referred to my case as interesting, exceeds expectations, and remarkable. Laypeople tend to use the word miracle.
Further, I can’t say enough about the psychological benefits of exertion in my case. After I went to Oregon we went straight to Boo Boo’s house and I slept and cried for 2 weeks bc I finally had time to think about what just happened. One day I went to the kitchen and sobbed on Mommy’s shoulder saying pathetically, All my pretty things (wah)! I was missing my teacups and dishes so badly bc I had just given them all away.
Then I decided it was time to get back to work. I showed up at The Southern Gym when they moved back in. At first I ran bc I felt like something was chasing me. By the end of that first week I finally no longer felt like I was trying to outrun something.
So I’m going to keep on going. For the first time the things that are making be better are the things I sought independently, not bc a doctor said so. I’ve taken great pains to become a productive member of society within the physical limitations that are mine. I’m still progressing but I’ve realized that significant gains in RecoveryLand come at a physical cost. That said, when I look at the events of this past summer, for instance, when I felt fantastic in June and July but tanked in August and September, I’d do everything over in a heartbeat.
I’ve talked to my Trainers about this and am confident in their expertise in terms of physicality, safety, and caution. CMD keeps me on a real short leash and Gen informed me last week (after she said my ankle was better) that she’d be all up on me re. getting checked out by the ENT.
So I’m in good hands. That’s the update on what’s been happening in RecoveryLand. As always, thanks for praying – I need it more than ever!