Living XL in what can be an X-hard world!

I live in a little town north of Atlanta. It’s a modern version of Mayberry. The local pharmacy looks frozen in time back in the sixties and sells everything from jewelry to walkers. One day I walked in to mail a package and left with a pair of pants. Myrna, the cashier, thought they would look good on me because of my long legs and insisted I try them on. I love them!

Dennis is on a lot of medication, so it is very convenient they deliver. Of course, I have become quite familiar with the delivery person, as he stops by my house several times a week. On his last drop off, I noticed the guy seemed a little uncomfortable and less chatty than usual; he would not make eye contact! I shrugged it off and decided he must be having a bad day. About an hour later, I passed a mirror and noticed right across my left breast on my new t-shirt was a big sticker that said XL 10 times right down the front. No wonder he ran like a scalded cat!

I think everybody knows the heart is also on the left side of the body. It got me thinking, my shirt said XL but is there an XL heart underneath? Not in all, but definitely in some ways.

I am an empathetic person, and I generally recognize other people’s moods. When someone is angry, I feel it physically as a burning sensation in my chest, when someone is sad I’m aware. I have learned to focus this ability; if you offer it up too freely, you end up attracting crazy people. It leads to a lot of holding strangers hands, listening to people confess things you may not want to know (you better be good at keeping secrets!) and even having your house painter call from jail to bail him out.

Being empathetic is a gift and a curse. It is definitely a curse when I go to the infusion room at the Multiple Sclerosis Centre of Atlanta. It is a large room where patients with Multiple Sclerosis sit in recliners and receive their IV infusion of different drugs for Multiple Sclerosis. It is a gut-wrenching, soul-crushing room. The first time I sat there with Dennis, I was so overwhelmed. I had to leave and throw up. I often get the beginnings of what I call my “psychic migraines,” and Amanda calls my “your being crazy” headaches.

The people in the infusion room are all in different stages of the disease. Some seemingly fine, some with canes, some with walkers, some in wheelchairs, some brought in by emergency transport. For the people who are doing well, it can be an ominous crystal ball possibly foretelling your future. Those patients generally do not make eye contact with the advanced cases, as if their fate might be contagious. Many of the advanced cases look around with haunted looks in their eyes, searching for comfort.

Yes, there are people in the infusion room who aren’t depressed. Some do put on lipstick, dress nice, and smile. Some do have hope in their eyes. There are patients happily knitting away for a new grandchild, or studying for a test. One woman was practically having phone sex with her boyfriend while she sat there, intravenously battling a complex neurological disease. So, that livened up the day. Also, there is much hope in these new medications and research; we should probably be grateful it even exists.

Today, however, the infusion room was especially hard. Last night we attended Dennis’ final Lacrosse banquet. Dennis has coached Lacrosse for over ten years. He was born to be a coach, and he loves it, and the kids. His weakened body will not allow him to handle the cold and the pace anymore. It is the end of an era for Dennis and nothing new is waiting in the wings for him to do.

At the banquet, Dennis gave a moving speech about his journey with MS and the reasons why he was retiring from coaching Lacrosse. He had a lot to say, including that many people with MS have a spouse who leaves. He said, “I was one of the lucky ones, she was horrible, and it got rid of her.” I had to pretend I was looking for my phone under the table. I was laughing so hard.

Then he got to the end of his speech; he distilled all his experience and advice to one sentence. When he was growing up, his coaches told him, “never, never, quit.” That’s it; you can’t quit. Not very philosophical, just an order.

I looked around at all those young men and their innocent faces. They don’t know what lies ahead and they too will all face adversity. My hope is they will always remember Coach Conway.

The coach that was in a wheelchair and could only move one hand, some. That was willing to have his wife take two hours to dress him to sit out in the cold and encourage them. That he was so uncomfortable many times, he collapsed in bed when he got home and did not get out again for 24 hours. That he withstood the frustration, of spending 30 minutes trying to find a way that was accessible to get onto the field at many schools. That their coach overcame the embarrassment of needing the lacrosse managers to put his rain poncho off and on, pick up things for him and help him drink water. That he had to have the players, push him out of the mud, and cut his poncho out of his wheels. That over the years he got hit in the back of the head, the chest, the finger (and it broke), and he laughed it off every time.

What they don’t know is that once Dennis came straight from the emergency room to coach two games. That he fell out of his chair in the parking lot of Etowah High School, he got some guys to put him back in and went right back to the field to coach. That cold is a terrible thing for MS, and he usually didn’t warm up until the early morning after being on the field the night before. That one parent actually told him, “Your a lucky man your in a wheelchair or I would whip your ass.” That when the team huddled up, he felt left out, looking up from waist high from outside the circle. That he couldn’t go to the bathroom, ANYWHERE, they played. That sometimes he was battling a pressure sore, and just sitting in his chair was painful.

Of course, Dennis has received as much as he gave. Those young men made him laugh, gave him purpose, and made him feel young again. He got to be part of something bigger than himself, a team.

The thing is, sometimes he wants to quit, and sometimes I do too. Fifty years ago his Football coach told him he can’t quit. Now he tells his players they can’t quit.

Dennis has been with the same neurologist for over 25 years. His name is Dr. Stewart. He is almost eighty, and he has devoted his medical career to trying to tame the serpent Multiple Sclerosis. He is just adorable; he wears bowties and has half-moon glasses. He looks like he should be a professor of potions at Hogwarts. He has taken good care of Dennis and been generous with his time and attention.

On our last visit to Dr. Stewart’s, Dennis asked whether it was worth it anymore to take his IV infusion. Not in surrender to the disease just that particular treatment, Dennis’ reasoning was “I’m a quadriplegic, is it worth it to endure the treatment, should I just go about trying to live?”. Dr. Stewart paused and looked at Dennis thoughtfully and said. “Dennis, you can still swallow, speak, and think clearly (well, that’s debatable), you can’t quit.” That was it; his coach told him he should not quit. Again, 50 years later, his coach now in the form of his neurologist gave the order. If Dennis could have saluted, he would have.

So, although I am wandering around cluelessly with a big XL over my heart, I think it belongs on Dennis. He has the courageous heart of a lion. Although this particular chapter has closed, I have complete faith in him that he will find a new avenue to be a “coach” to others.

So thank you, fellow coaches, most of you (there were a few total butt-heads), were terrific, and have become life long friends. Thank you, players, you will never understand what you have done for Dennis, or how much he loves you.

Most importantly, I am grateful for all the friends, health care professionals, and family that are coaches for us and keep encouraging us to Never Never Quit.

Dennis and the reason he began coaching Lacrosse, Kyle, my sweet son.

Great job Coach Conway, but you can’t quit because the games not over.

8 thoughts on “Living XL in what can be an X-hard world!”

  1. What a beautiful, heartwarming tribute to yours, and everyone’s, very own Coach Conway. Love and respect, dear friend.


  2. What a fantastic tribute! You BOTH are an inspiration to so many people 😍 our family feels blessed to have you in our lives.
    Congrats on so many great years as a WHS lacrosse coach, Coach D!
    The Stapletons


  3. That was so heartwarming! Congratulations to Dennis on a great coaching career and on never giving up! You both have XL hearts….I can see that, without the sticker!


  4. You also are amazing….we all know how incredible Dennis is and that he will always be remembered and how he has impacted these kids and so many others….but you both are a team…don’t ever quit! Love to you Dennis & Leana

    Liked by 1 person

  5. T H I S touched my soul and filled my heart with great joy and admiration. Thank you for sharing and for being so transparent. You both are LOVED!


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