All posts by thelifewelllived@gmail.com

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Recovering or Diminished

  • If this is three weeks beard growth while in hospital, I can imagine the results of a no shave November.

Four weeks ago, I was annoyed with myself for not running faster than 9.5 min miles on my normal run. I attributed it to just a bad MS day which happens. Three days later, I had trouble even getting energy to get out of bed. The next day, I went to Howard County Hospital starting a 22 day hospitalization.


During the hospitalization,  I had two chest surgeries to deal with my empyeema and then drain remaining gook from around my lungs, fluids pumped into me to deal with sepsis, two chest tubes, and various other meds and treatments. I had wonderful nurses who went the extra mile doing things like giving me a USB powered fan to keep cool because I was always hot, and I had experiences that were the opposite. The important part is after all this, I finally made it home.

  • The x-ray on left is from day i went home. The x-ray on the right is from when I went to hospital, and it got worse before first surgery.

Now I am at home where the effort to stand and walk to the bathroom, relieve myself, stand up, wash hands and walk back to the bed or chair is enough to wind me. I have physical therapy where I am told not to push too hard or I will backslide. I am not going to lie, it seems a mountain to climb to get back into the shape I was in just a month ago.


As my wife gets worn to the bone with our four medically fragile kids and I see how little I can help now, I realize my desire to run again is so much less than my current sense of diminished ability to give the help my family needs. That only fuels the desire to do what I  can to ramp up the recovery process, to push harder into the  breathing and walking exercises. I mean that is how I have always dealt with physical challenges…except I can’t now. My ability to impact this recovery feels diminished. 


So I am left telling myself I have to keep perspective. A couple of weeks ago i was airlifted to another hospital for surgery because it would have been dangerous to drive me in an ambulance.  I am better then I was then. Not long after that I was intubated for 2 days after my first surgery. After my second surgery I had 2 chest tubes and couldn’t go to the bathroom without a nurse to help with all my tubes. I am better than then too. In those time frames, I am recovering. 


I think the true test now comes with maintaining the frame of reference to stay positive. I am better today than yesterday and need to stop measuring today against a month ago. The true challenge is maintaining the frame of reference I am recovering. The competitive side of me always loves a challenge, but there are times I fail to keep the faith because it doesn’t feel better right now. Thankfully, these moments are fleeting.


Of course recovery will be when i reach the point half way up the mountain where I was when this chest infection started. I will get there. Then it’s on to see the view from the top. Till then, all I can do is wake every day saying. “Bring it…just a bit slower for now please.”

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We Just Keep Growing Older Together

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The path always looks to disappear when further away, but what a beautiful path it is.

Years ago, I began this blog with a thought towards gaining wisdom by being able to look back on years of memories in the somewhat vain hope of seeing a thread worthy of the blog’s title, The Life Well Lived. Now as my oldest is nearing the end of her junior year of high school, I think what I have learned most is how much I have benefited from the help of all those around me. 

I always knew I married well.  19 years later, I know I was lucky enough to win the hand of a wonderful cook, nurse and mother for our kids.  She shows through her daily actions what it is to put others’ needs and wants before her own.  I can only hope our children learn those values.  It was her vision that enchanted and inspired my devotion to the idea of raising medically fragile children. 

Then I look at each of my four children, and they each have taught me in their own ways what resilience means.  After I look at what each of them has gone through, how can I complain too much about the pain in my head, or the annoying lapses of memory? Moreover, they still teach me the need to lean into each other when we need it.  I will remember for years watching my oldest overcome her own fears of speaking in public to rush on stage to help her youngest sister through a song.

I hope my lack of concern about how others may judge me will fortify our youngest who has identified as trans since she was 2 when she mentioned wanting to just cut off her penis because she is a girl.  I have been asked, “What will you do if R still wants to wear dresses as a teen or an adult?”  My answer remains, “I hope I will be able to make sure she has clothes she likes whether they are dresses or pants.”  As somebody who wore loud Hawaiian shirts every Friday for years regardless of style in homage to my dad who wore them every day to teach school, I hope she learns the people who matter will judge her on far more than her clothes.  They will judge her on more than the sex she identifies herself as. Sadly, it seems there are many who will not live their way to truth to which she has lead me.

That leads me into what may be the biggest truth I have learned on this journey.  More and more I am coming to believe that for me the life well lived is one lived with the purpose of allowing others to live their lives more honestly and fully.  That starts with honesty to true selves, regardless of societal pressures.  Maybe that is even enough… maybe… and what a great gift my kids have given me if I can live that truth.

Lord only knows MS will rob us of much of what society says we should use to define ourselves.  Many of us will lose our jobs, our abilities, and maybe our ability to think and remember obvious things.  The question is: how much of that defines us?  

I hope I am more than those things.  I may be all of those things, but I am also more than the job I do, the chores I do or forget to do, the shirts I can’t button, etc… I hope I am also the guy who loves his wife and kids, the one who loves to run, and to foster animals. I hope I am always the Abbey boy willing to try, willing to learn something new.

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