So Long, and Thanks For All the Music

On Sunday, my husband's grandmother slipped peacefully from this life into the next.  She was a talented, fun-loving and kind-hearted woman, with a bit of sassiness to her now and then.  Along with her musically gifted daughter (my mother-in-law) she taught me to play the auto-harp, although I never gave those strings the vibrant life that she did.  I think I remember most fondly her crinkly-eyed smile and easy laughter, and the attentive, active way she enjoyed listening to and performing music.  Some people seem to kind of space out when they enjoy music, but she was always right there with you, in the moment, encouraging you to express yourself or being fully engaged in her own expression. 

Because she was the type of lady who didn't want everyone to make a big fuss over her, she had decided to have a simple, small graveside service for her family's farewells.  She didn't want to have a big traffic-stopping procession of cars traveling through town from a church to a cemetery.  Unfortunately, this is a situation in which Spinal Cord Injury (SCI) rears its big ugly head.  The forecast for her Thursday morning service indicates an excessive heat warning, temperatures are likely to be in the nineties by the time her mourners assemble, and while most people will find that swelteringly hot and uncomfortable, for me it would not be a discomfort, it would be a medical crisis.  SCI means I can't properly regulate my body temperature; my blood vessels don't dilate properly, my body doesn't sweat the way it should, all the natural cooling mechanisms, and even the sensors that would sound the alarm bells in my brain, aren't working.  Within minutes I would start to get a headache, feel sick and thirsty, get confused, and soon after take very ill.  By the time my brain got the idea that I might be too hot, however, it would be well into the realm of heat stroke, and it can take hours to cool the body back down, outside of emergency measures like ice baths.  Everything I read says it's not safe for me to try to attend the service, and with all that we've been through this year, I've got to play it safe.  So my husband, who admittedly faces any kind adversity or sadness more stoically when I'm by his side, will have to stand tall and strong for his mother without me, and face his own grief, and that of his children, without my presence to comfort him.  Oh, I'll be close by, probably, in some air conditioned building perhaps, or waiting at home for his return, but when that moment to say goodbye to her comes, I won't be there holding his hand.  It breaks my heart.  He's been here for me through the toughest of times, and when he needs me, I'll be hiding from the sun and the heat.  

But...maybe Grandma has one last thing to teach us.  My husband's grandfather was the love of her life, and preceded her in death by about eight years.  Yet somehow she managed to soldier on, to find joy, to cherish her family, to laugh and sing and play, for years after his loss left that gaping hole in her life.  If she could do that, maybe we all can.  Maybe we can comfort each other even when we're apart, accept that sometimes, we'll have sorrow, and then embrace life with gratitude anyway.  I don't have to faint at her graveside to honor that spirit, nor to say my loving bon voyage to her.  So long, Grandma, and thanks for all the music.

Still Laughing

I was in tears from the pain by the time I got done with therapy, used the commode, and got myself back into bed yesterday.  I cried again when my husband massaged my tightening ankles and the backs of my lower calves trying to help save me from losing flexibility and sensation in my ankle joints, because the skin nerves are so hyper-sensitive that while the muscles and tendons desperately need to be worked over, the skin above them feels like it's being split open and peeled off with every massaging stroke.  After I had calmed down and recovered from the massage a little bit, I cried one more time, sitting in my bed watching my ankles flex and draw out some shapely muscles in my calves and thighs, because I can still remember sitting in a hospital bed six months ago when my legs couldn't do that, when I strained and strained to pull my toes back and got nothing more than a spastic wiggle from a single toe.  I remembered how flaccid and repulsive my unresponsive legs appeared to me back then, and wept over how muscular and toned they are by comparison now.  Still plenty more muscle building to do, they don't exactly look normal yet, but so much better than they were, and for that improvement, that seemed almost unreachable back then, I cried for joy.

I still find things to laugh at, though.  There's always humor lurking if you're looking for it.  Yesterday's levity came from a bottle of hand sanitizer.  At home our bottle likes to enthusiastically splat several inches further out than the expectant hand is prepared for, and the bottle my therapist grabbed for me at the end of our session yesterday is apparently no different.  While I held one palm out to her and grasped my cup of half-full water (not half-empty) in my other hand, she went to squirt me with some gel and it came flying out of the bottle, dropping several blobs on my clothes, and a nice big plopping splash of it in my water.  We both had a good laugh, and she judiciously offered to get me a new cup of water.  So there I was in a blue dress, frantically trying to wipe up slimy wet messy splats off the front of it, and I couldn't help thinking, just like poor Ms. Lewinsky!  But with much less disgust, and a lot more laughing.

Breaking the Silence

It's been about two weeks since the car accident.  I have kept pretty quiet during this time, evaluating my situation and seeking out legal advice.  There have been too many effects from this accident, and too significant, for me to ignore.  I had hoped that by now the effects would have diminished, or cleared up completely, but they haven't.  So I have retained legal counsel to represent my best interests in settling my personal injury claims against the insurance of and the driver who hit me.  

How do you distinguish the way I was before the accident from the way I am now, you might wonder?  It's easy to dismiss the impact if all you see is the general picture.  I was in a wheelchair when it happened, I still require a wheelchair now.  I could walk with a walker, I still can now.  I've continued to make important progress in physical therapy.  So everything's fine, right?

Wrong.  You see, that's just not enough detail to understand what's really been happening.  The number one impact of the accident has been pain.  So much pain.  But I was in pain before, you might argue.  That would be true.  But fortunately the medical profession has decided it's useful to measure pain on a scale, and so we have a handy tool for identifying changes in pain levels.  Before the accident my daily, average pain was at a level of 2-3.  At that level I choose to abstain from narcotic pain medicines and could function optimally in physical therapy.  After the accident, my daily average pain level has not gone below 4 and is most often between 5 and 6.  That's twice as bad.  At that level I need narcotic pain medicine on a daily basis and my ability to achieve goals in physical therapy is dramatically impacted.  In addition, my power chair is still in the repair shop, and without it I'm stuck in a manual wheelchair that doesn't recline at all, and the backrest doesn't come all the way up my back, so it causes me pain the whole time I'm sitting in it and restricts my ability to get out of the house or spend time out of my bed.  In a power chair I can get in and out of the house all by myself; in a manual chair I have to have someone to help leverage the front caster wheels over my front door threshold, requiring a second person to stand behind me and pop a wheelie as I go through the door.

The impact on my therapy performance is a significant problem when you consider that medical insurance will only provide a specific number of physical therapy visits per calendar year.  I had objectives that we were hoping to accomplish before my visits ran out and now, with my performance diminished by pain and the resulting decrease in stamina, some objectives will be out of reach unless I can somehow extend my access to physical therapy.  These aren't just generalizations, either, I'm not just speculating that I'm 'probably' not doing as well as I would have been without the extra pain.  There are measurable differences in my performance at therapy.  Before the accident I could walk with my walker for 168ft without having to stop and sit down to rest, and I was adding anywhere from 20-50ft per week to my previous records to reach that point.  A couple of days after the accident when I returned to therapy the furthest I could push had dropped to 105ft.  Two weeks after the accident, through tremendous effort and a lot of pain, I've still only regained up to 125ft at one time, way behind where I was before the accident even all this time later, and only gaining about ten feet per week.

Of course, there are still highlights.  I never sit back and take it easy, it's not in my nature, and being hurt in a car accident does not lessen my burning desire to get back to a more normal, active life.  So of course I've continued to make progress in therapy, including pushing beyond a handful of practice stairs until I can now climb a full 12-step flight of stairs, rest at the top, and then come back down.  It's a tremendous step forward, but it comes at a great price; accomplishing those stairs raises my pain level to 6 every time, and it takes at least a day afterward to recover from the muscle fatigue in my legs and get my pain back down to a 4 and 5.  I continue to extend the total distance I can walk within a therapy session, which is good, but because of my diminished ability, this is done in shorter segments with longer rests in between; instead of walking 440ft in one or two really long walks, I have just now accomplished walking 440ft in four shorter walks.  

I have an altered sense of numbness in my right foot.  Due to the nature of my spinal cord injury it is very difficult for me to assess if this is a worsening of sensation in that foot or an improvement in sensation in the left foot; I can only tell that they no longer feel the same and one doesn't work as well as the other.  That and other nerve-related symptoms will be discussed with my neurosurgeon when I see him on Monday, and I think it's very possible that he will recommend MRI to evaluate whether the accident has caused any changes in swelling or affected the tumors at all.

Lastly, there is an emotional component to this accident, for which I was not prepared.  I knew I would likely be in pain from it, although I thought the pain would go back to 'normal' by now.  I knew there could possibly be swelling or other nerve damage that might cause problems, and mentally prepared myself for those issues.  But I didn't realize that I would be terrified every time I get in the car from now on, flinching from every minor swerve, gripping my wheelchair arms until my hands turn white and feel numb while frantically watching the vehicles on all sides of me and hoping none of them makes any stupid mistakes.  I didn't know this fear would compel me to stay home more, to pass up on outings I might otherwise have considered, because 'out there' I'm so much more vulnerable than 'in here' at home.  I didn't know I would have nightmares in which I relive the accident, and wake up sweating and afraid.

So yes, I've been down, and I've been kicked while I'm down, but I'm still kicking back, and I'm not going to sit here and let someone ruin everything I've worked for.  I've discussed this blog with my attorney, and with the understanding that nothing I say here is any different from what my medical records will show, have been advised that I can keep writing.  No more silence.