One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time.
But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here.
Pain throughout my body and persistent fatigue interfere with many activities. Vertigo may strike at any time, leaving me feeling uneasy. But to my family, or even just a casual observer, I look like just another regular, 30-something male.
However, to borrow from the disclaimer on most automobile mirrors, “Individuals Living with MS May Appear Healthier Than They Are”.
What gets lost in this world of looking like a “regular Joe” (or Jane) is that the people close to you who know you have MS – including yourself – might sometimes forget that you actually have MS.
In my opinion, that’s not entirely a bad thing. I guess the Product Manager really never left me; I want to provide my family and friends a “seamless experience,” where MS complicates or hinders their lives to the smallest extent possible.
A few weeks ago, after a day-long IVIG treatment, I pushed myself to attend a play at my son’s school. He had been excited for months about this night and although I looked forward to his performance, I had very little energy to spare.
A parent sometimes missing an athletic event, or school play, isn’t an uncommon occurrence and I think it’s something that most kids grow to understand and even expect. But when my kids look out into the audience and don’t see me, it’s not because I had to work late, or couldn’t catch an early flight home. Rather, the last time they saw me, I was relaxing….in a chair…at home.
And that is where the beautiful Norman Rockwell painting of having more time to spend with the family clashes with the reality of living with multiple sclerosis.
My children see me but must wonder why I don’t play more with them outside? Why, when I’m helping them with homework, do I just start grimacing when hit with sudden shots of pain?
To be clear – I’m not a perfectionist, far from it.
Handyman, I am not. My singing can make a grown man cry. Don’t ask me for directions or you’ll likely end up in Siberia. Arts and crafts? My children’s skills exceeded my own by the time they could walk.
And I’m at peace with these and other similar examples. One has to know his strengths. It would be an inefficient use of my time to perfect my craftiness or how well I sing “Shine On Your Crazy Diamond.”
That doesn’t mean I don’t enjoy drawing, cutting and pasting silly pictures with my kiddos on a Saturday afternoon while belting out a ballad by Pink Floyd. Sometimes it truly is the heart that really matters, and not everything I do needs to be classified as “Father of the Year” award material.
But needing to choose rest over just being a Dad? That stings. It’s a different category from the previous examples because supporting and inspiring my family define who I am.
As we drove to my son’s play that night, I wondered to myself, “Would it be easier to miss one of my children’s events if I was at the office or out of town?”?
I’m not sure if satisfying answers exist to theoretical questions such as this…but, without any glamorous stories of closing deals or travel to a distant city to explain my absence, I worry my children might think I’m just not that interested.
As my son takes the stage, this internal debate in my head fades into the shadows. His unbridled enthusiasm lights up the room, he sees me in the audience and gives a thumbs up. In that moment, I forget I have MS…and I wish it could last forever.