Involuntary Marathon

Sunday, May 2

8:30 pm

Overall, I’ve had a pretty good weekend. I passed much of the time by doing exercises, both PT and OT, and walking around the cul-de-sac with Linda. Today, I vacuumed the kitchen floor and took out the trash from the kitchen to the garage. Together, that took me close to 45 minutes. There was, however, a fair amount of downtime, which I am still struggling to fill. I need to come up with a project I can do but have yet to think of an idea.

Since my injury, I have tried not to read much about central cord syndrome. I don’t know if that’s been a denial or avoidance mechanism. I understand that there’s such a broad spectrum of consequences and severity with central cord syndrome—not to mention spinal cord injuries in general—and I did not want to read about all sorts of bad things that won’t actually happen to me. I’ve still picked up quite a bit about it from people around me, but there’s one designation of my injury in particular that I’ve been trying to ignore: the VA categorizing me as a “catastrophic injury” (as explained in a previous post). That description is a little hard to get my head around.

As it turns out, if you’ve had any spinal cord injury in which you’ve lost feeling, the VA automatically considers it a “catastrophic injury.” While per se this descriptor only has a tangential relationship to the recovery prognosis, it does emphasize that, regardless of the level of injury, there is likely to be permanent damage. That’s something I need to face. When the time comes.

Until it’s very clear that some aspect of my injury will not improve—for example, maybe the numbness in my toes will never subside—I don’t know what it will be, but until it’s obvious that something’s not going to change, I’m going to continue to believe that I’m going to keep getting better. Whatever residual effects I have from this injury, I’ll deal with them when the time comes. I will remember that evidence indicates that I could continue to improve for up to 18 months, and I’m a mere five weeks out from my injury. So I am still getting warmed up on this marathon.

I can’t help but be very happy with the progress I’ve made…even though I have about 26 miles to go. There’s a reason I was never a marathon runner: I played rugby because you sprint and then you rest and then sprint and then rest. And when you are sprinting, there is always something you are sprinting towards. Not so here. Plus, unfortunately, this is not a marathon I could train for. It’s one I got thrown into, and I have no choice but to finish the race.

I do understand that bouts of depression are not only a common part of this ordeal but expected and natural. But I have to say that, in my journey so far, I count my times of depression in hours, not in days.

In other news, I’d like to bring everyone up to speed on my VA benefits. I mentioned earlier that there was a possibility that I would go to an inpatient facility at a VA hospital in Richmond upon my leaving SAI on Tuesday. After my daughters made a flurry of calls on my behalf, and helpful individuals both at nonprofits and within the VA moved at warp speed to get me approved, I was cleared for transfer to the VA hours before I was to be discharged from SAI. But, after discussing it with my therapists, I decided the best course for me was to turn down the inpatient opportunity and move directly to home and outpatient therapy at UVA. This decision was made easier because my angels at SAI had pulled strings at UVA to get me into the outpatient program almost immediately, so I knew there wasn’t going to be a large gap in my therapy.

After I turned down the inpatient VA option, I was feeling pressure from some quarters that I should still go there. (Christine notes that there was also some concern that the decision to turn down inpatient would affect his ability to tap into VA benefits on an outpatient basis going forward. This will be especially important when private insurance stops covering the outpatient therapy at UVA.) Thanks to a wonderful woman who runs the military and veterans program at the Christopher Reeve Foundation (Christine adds, without whom we would probably still be trying to correct the benefits designation at the VA), I got connected with a gentleman who also works at the Reeve Foundation, in addition to running a nonprofit for paralyzed veterans, which he is. So I called him and talked to him about the VA inpatient clinic and why I made my decision. He was 100% supportive of what I had decided, so I still feel like I made the best decision for me.

He also put us in contact with the right people at the VA to move forward with outpatient benefits. The good thing about getting approved at warp speed for inpatient rehab was that it did correct my designation to a category 4 catastrophic injury, so I am in the VA system as eligible for benefits in general, for the rest of my life, as I am a civilian veteran who suffered a spinal cord injury. On Friday, Linda called the intake coordinator at the VA outpatient center, who not only had my information and eligibility already but also informed Linda that there is a new VA facility in Charlottesville I could go to. This means we would not have to drive 90 minutes each way to therapy sessions at the VA in Richmond, which is important for Linda’s time but also crucial for me as I cannot currently ride in the car comfortably for that long.

Within an hour after she initially called, Linda received a call from someone at the Charlottesville facility. I will have an assessment likely next week, possibly virtually, to determine what I might be eligible for as far as therapy and durable medical equipment (DME)—i.e., things I might need to make my life easier or more fulfilling as I work through this catastrophic injury. From what I understand, getting a recumbent bike is not out of the question at all!