One Year Ago

Today is my birthday! (Please excuse the exclamation point.) A year ago today it was muggy and rainy as it is now, and I went for six mile run which I barely finished. I had worked my way up to eight again after years off from distance running. That was the day I began to realize something was wrong, but as you can read in My SCD Story, I had no idea what I was about to face. A year and one craniotomy later, I’m still facing it — but at least it has a name now, and I have a few new tools for fighting it.

For the past sixteen days I was in Germany. I travelled with my warrior wife and two small children to a time-zone seven hours away. I got my first ear infection in my repaired ear on day one of the trip, but armed with emergency steroids and antibiotics, it was sent packing fast. I had several good days to start, then relapsed into symptoms that felt a lot like the beginning of everything a year ago. It’s the left ear acting up, reminding me of those holes still in my head.

Despite the downturn, though, and the hearing loss and tinnitus, I have a lot to be grateful for only five months removed from surgery.

The fact that I made that trip  — two 18 hour travel days, hustling through airports, walking through big cities and across open country side — is pretty incredible to me.

I’m able to write on most days without serious brain fog, though cranking out a letter of recommendation yesterday with the jet lag was pretty rough. I have lots of projects cooking again which give me energy and hope. I find, for whatever reason, that pain relievers and swelling-reducers lessen the pressure that builds in my skull over time, as does sleep, so I’m hoping to find a healthy balance there. Can’t live on tylenol, I guess. I’m also beginning Cognitive Rehabilitation Therapy today, hoping to sharpen up and take the fight to memory loss and brain fog. Taking consistent breaks from the computer screen every 20 minutes helps, and forces me to waste less time. Avoiding stress, or coping with it well, helps, too.

I worked in my garden for two hours yesterday, which was necessary given that it had been neglected for over two weeks.  I can walk a couple of miles at a time. Occasionally I can jog if I keep my eyes on the ground and not on the bouncing horizon.  My legs get tired really fast, and bending up and down makes me dizzy, but avoiding those kinds of situations won’t make it better, and does not teach the brain to adapt, so I plough through it.

With consistent stretching, I think I’m learning to manage SCDS’ power to twist my body into painful knots. My neck, shoulders and left hip/leg are still problem areas, but I’m working on it with PT, VRT and Yoga. I stretch a lot, and spend a lot of time and money working for equilibrium these days, but I’m lucky to have these options and opportunities.

I’ve learned that sodium, caffeine, alcohol, and sugar make me feel worse. Add that to my gluten free diet from Celiac Disease, and the fun food options quickly become limited — but also more healthy in the long run.

My loving sister-in-law is an incredible audiologist, and she is going to be able to get me a great deal on cros hearing aids if I want them. I’m still trying to decide if I need them yet. I feel the loss at work more than at home, so I probably should. The neuromonics tinnitus therapy is still a bit out of our price range, and while it’s bothersome, I’m coping with that fairly well most days.

So, as I gain a year today, I’m hopeful but not content, inspired but not naive, and better but not well. I may never be all of what I was, but I can try to be the best at what I am now.

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Permanent Profound Hearing Loss

I saw Dr. Wiet yesterday for my four-month review. Mostly though, I saw his audiologist. It’s official. My right ear hearing loss is permanent and profound. What I do hear is unuseful and distorted. The tinnitus is likely to stay, too, and has been deemed at the upper end of the moderate range. We talked about neuromonic therapy and cros-aid hearing aids, but at an uninsurable $8,000 price tag for both combined, that ain’t happening any time soon.

He told me to get on with my life. But I still have a lot of “good ear” bilateral SCD symptoms that make my days unpredictable and my weeks uneven. Loud rooms are difficult. Whispers almost impossible. The limbic system of the brain is in a constant stress cycle due to the tinnitus, as the brain creates the sound itself to make up for the loss, but then perceives that sound as a threat, activating the fight or flight stress instincts and causing constant edginess and mental fatigue. I think I’m dealing with all of that pretty well. It’s the hearing that bothers me the most. And worrying about my left ear going bad, too.

I need a new plan. Insurance does at least cover the cognitive rehab, since we’ve met max out-of-pocket, so I’m hopeful about that.

Let It Go

I have a six year-old girl. I know that song VERY well. I went to Yoga again today, and interestingly enough, our focus was on “letting go.” Thank god my teacher had never heard the song  (which I can now recite verbatim), but I did realize that I have a lot whole lot left to let go of, so I’m going to try and focus on letting go of these things for now:

  • my hearing loss
  • my physical limitations
  • my meta-obsession about my own cognitive function
  • my bilateral worries
  • my fear
  • my complaining

“You Can Only Lose What You Cling To.” — Buddha

Bendy after Brain Surgery

A long time ago in a land far, far away — Los Angeles — this guy here was a fairly serious yogi. I practiced for two years, pretty intensely, and saw a ton of benefit from it. Then we moved twice, I got sick, and it all fell away.

I went back today, not yet four months post-op. I was nervous about going to the studio. The sign on the studio door says “leave your ego and your shoes at the door.” As a competitive endurance athlete for much of my adult life, ego-checking was never my specialty. I’m ashamed to admit I enjoyed racing past the casual cyclist at 30 MPH, or chasing down every runner or slow biker ahead of me on the jogging trail. Now, when I go for a run/walk (I can run for 1 minute, then walk for 5), I’m the one getting buzzed — by other runners and in my head. Yoga isn’t supposed to be about any of that competitive stuff, though. It’s “meet yourself where you are.” I never really understood that philosophy until recently. Back in the day, I would be doing all I could do bend and twist as far as the ballet dancer next to me in class — which was stupid and wrong, but it’s who I was then.

My L.A. hey-day.

Today, my legs wobbled and are still shaking, my arms grew tired ridiculously fast, but I held. I found peace and calm. I stayed within myself and did not push. I felt opened up and for the most part, balanced. I’m hoping this will be an answer for me in terms of calming nerves, remaining centered, and rebuilding strength, balance, flexibility, and composure — all things this ordeal has cost me.

A friend of mine recently pointed me to a story on ESPN about athletes and soldiers who have suffered brain injuries seeking cognitive rehabilitation training.  I’ve found someone in my town who does that, and will begin working with her next week. All in all, I do everything that is asked of me mentally, but I don’t feel as sharp as I once was creatively or critically. I’m hoping this training will help me gain back lost ground and also stave off any brain fog that could arrive when and if my other ear gets worse. I’ll keep you updated.

People continue to find the blog and write to me. I wish you all well and enjoy the fellowship, even if it is centered on this shitty problem.  I fight bitterness sometimes. I’m happy whenever someone comes through a SCDS surgery okay, but there’s always this pathetic twinge of “why me” when it comes to my hearing loss and raging tinnitus. I see Dr. Wiet again in a few weeks, and hope to begin investigating hearing aids, or tinnitus relief of some kind. I got an ear infection in my good ear last week and was left virtually deaf. It was scary, but has since cleared. I feel like a time bomb of potential silence. Almost like I should hear everything I can possibly hear just in case I have to go through this again and lose it all.

But for now, I’m meeting myself where I am and enjoying the day I have in front of me. I hope you are, too.

 

If she can do it, so can I.

I’ve been so focused on functionality, I’ve yet to totally deal with things emotionally since my surgery and its aftermath. As a result, it doesn’t take much to make me cry these days. I had no hope avoiding tears watching the story of blind pole-vaulter Charlotte Brown, and yet, all she does is give me hope: http://es.pn/SIlna4

Blind pole-vaulter in Texas.

A Narrowing Window of Time

Brad:

Love this. Thank you!

Originally posted on On a Tilt a Whirl:

3 months ago I shuffled into a hospital with bouncing vision, the aid of a cane, and a brain that was consistently forgetting things. With a shaky hand I signed my name off to the surgical risks of brain damage, paralysis and even death. Crazy enough I will do it once more. Despite all that, I now feel more fortunate than I ever was before. Because before being diagnosed with SCDS I took so many basic and simple things for granted. Today, with one surgery behind me, and another in my future, I am appreciating the narrow window of time that I am in.

There are few things in life that can make your attitude hit the “reset button” but after living some if my life in the way that an isolated, disabled person lives, I feel find that my outlook on life has certainly been reset. In the months…

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