Climbing Stroke Crisis Mountain:

Mentoring at The Stroke Network

Everyone says that you get as much out of mentoring as you give. I’m not sure how you measure something like that, but I do know that it’s helped me, being a mentor at The Stroke Network. When caregiver mentors, like me, hear the raw feelings expressed by newbie caregivers, we often say to ourselves: “Wow, I remember feeling that way.” That’s when the realization hits you that you’ve not only climbed Stroke Crisis Mountain, but you’ve also planted a flag on top. By looking back, you can see how far you’ve come. Sure, we might stumble and fall part way down occasionally but the footholds are there now, the path is marked. Finding the way back up to the top isn’t the same intense struggle as it was the first time we made that climb.

I wasn’t lucky enough to have found on-line support back in the first three years after my husband Don’s stroke. We were too busy in those years downsizing our lives or doing the therapy circuit to go to the local support group meetings, even if I had wanted to make the required trip downtown after dark. That’s something I’ve avoided doing my entire life---downtown after dark---and it seemed absolutely too much to ask, on top of everything else the stroke brought into my life, for me to start doing the downtown thing in the last half of my fifties.

Later on, we had biweekly speech classes at a local college language disorders clinic that bought us in contact with other stroke survivors and spouses/caregivers and that helped with the feelings of isolation. It kept us from thinking that we were the only ones in the world who had gotten a terrible nightmare dumped at our feet. Yet, finding on-line support gave me the ability to get more in-depth support from others who had already made their way up the mountain.

The nightmare of Don’s and mine first few years post stroke are over. Some people might not think that’s true when they see me pushing Don in his wheelchair and with him having very little speech on the tip of his tongue. I see it in their eyes sometimes---that “you poor dear” look. Okay, I’ll admit it. If I’m feeling sorry for myself, I might even like seeing that look once in a while. Don’t we all want others to understand our pain, even if that understanding comes in the form of a fleeting look from a strange? However, getting on-line support is a 1000% better than those you-poor-dear looks that I hoarded like Christmas candy in the early years post Don’s stroke.

Now that we’re over six years out from the stroke, we’re concentrating on learning how to be old. It isn’t easy. We don’t bring sandwich bags to restaurants so we can steal jelly containers and sugar packets off the tables. We don’t go to bed with the sun and get up with the geese that fly over at daybreak. We aren’t organized. We do things like leave the house without umbrellas and raincoats and end up sitting in the pouring rain at the free Blues Concerts in the park. At least we’ve got the part right about looking for free entertainment and cheap eating. Just yesterday we went to a VFW Sunday dinner.

The VFW hall was one of those little seedy places out in the country, small—they can only seat around sixty people at a time. It’s the only place we’ve been lately that made me feel young. Across from us sat a guy who used to be Don’s old Sunday school teacher back when he was a little kid. You do the math; that makes the guy ninety something. We also met a man who worked with my father when Dad was a die maker after World War II.

Listening to this old guy made me think about what Don would have been like in his nineties, if not for the fact that aphasia and apraxia took all but a few of his words. The old guy talked so much that I nearly peed my pants being a polite listener who couldn’t find an opening to cut in and excuse her self. His colorful stories drifted from one to another in an easy rhythm perfected, no doubt, over many decades of telling. Don could do that.

It’s interesting, as a student of human emotions, how we can shift gears so quickly. How one minute a nice old man could make me think back to carefree, happy times when my dad was still alive and the next moment he could cause a hint of melancholy to wash over me. I didn’t stumble off from the top of Stroke Crisis Mountain, but I forgot for a moment to look for the rainbow on the other side of the mist.

Being a mentor and sharing moments like this with other members at StrokeNet helps. The seasoned site users will say to you, “I’ve been there, done that” and you find comfort in knowing you are not alone. And the newbies to the stroke experience will wistfully ask, “Will I ever get to a place where I no longer feel like I could burst into tears when I’m in a similar situation?” We mentors can then reassure them, “Yes, in time you will.”
 

Jean is a caregiver to her husband, Don, who had a massive stroke in May of 2000 that left him right side paralyzed and with severe aphasia, apraxia and agraphia. They live in Michigan and have found many wheelchair friendly activities to enjoy in their New Normal lives.  

Jean is Blog Community Administrator for The Stroke Network