It’s a Wheelchair kinda day!


Its 86 degrees out side and a gorgeous day. We spend 8 hours on the Schuylkill River in Philadelphia. Our daughter is here with her college Rowing Team, Univ. of Pittsburgh, to compete in the DAD Vail Regatta. We are very happy to see her Row!

Phone call to Dad last night: “I’ve been to the race sight and it is HUGE, I think you should think about bringing mom’s wheelchair.

Slightly frantic phone call this morning:”Dad, I am here again and I am sure Mom will need her wheelchair. Are you definitely gonna bring it? There’s NO WAY she’ll be able to do this without it!”

Of course we put it in the trunk, and I am grateful that she thought of me.

But…we get there and we have a problem! My husband drives a wheelchair like he drives his car, like a TWELVE YEAR OLD. Needless to say, I am not happy with this. This place is in no way wheelchair friendly. Technically, it is handicapped accessible, there’s even a Handicap Port-O-Potty.  The rest is only good if you want to roll in a straight line, up and down the sidewalk all day.  I have my camera and this’ll never work! Huge loss of freedom. We are rolling along with the crowd, and everything I see around me is beautiful. If I were walking, I could stop on a dime to get the shot. I could turn around to check things out from a different perspective. You can’t do that in a wheelchair. I struggle with the guilt of having him stop. Finally, I can’t take it anymore and I say, “Stop, pull over”, and he does. Now it’s time to use ALL of my marital diplomacy. My daughter and I lock eyes and I see in her expression, fear of the unknown. I slowly rise from the chair and go around the back of it. I hold my husbands’ arm and speak softly in his ear, “Honey, I want to get out and walk. I love you and I really appreciate you doing this for me. I know it’s hard in this heat and with all of these people but, I really need to get out and walk. I am miserable in the chair. Taking pictures is impossible. I need to be able to turn and move around for the shot, and I can’t do that in the chair. It’s killing me.”

Husband: “But Bay, that’s crazy! In this heat, with everything so spread out, there’s no…”

Cut off by me:”I’ll be fine.  I feel very strong and Estizer will be with me. I’ll stop when I’m tired, and rest. We’ve even got our cell phones, so I can call you when I’ve done enough.”  I think this is a great idea and with an affirming kiss I turn and join Estizer in front of the chair. She holds my hand and we begin to walk away.

But wait- WHAT’S THIS?

He’s still here. I turn and say, “Honey, you can go and I’ll just call you!” He says, “No, I’m going to stay with you”. I’m mortified. I say, “What? You’re just gonna follow us with the chair? We’re gonna look retarded!” He looks away from me and with a defiant tone in his voice says, “YES”.

We start walking and he stays with us as if this is perfectly normal. I walk about 100 meters and in THIS heat, it feels like a hundred miles. I need to stop and rest, but I’ve pushed it (determined to show him that I can do this). I don’t see anywhere close to go, and I need to sit NOW. I turn towards him and we connect.  We do that mind link thing, that married couples do.

Without a word, he says to me,” I knew I was right! It’s too hot and you shouldn’t be doing this”. Also, with no words, I say to him, “I love you and yes, you were right. Thank you” Then, I sit. copy

Comments and Thoughts:

How does the heat affect you?



Filed under Long Loving Marriages, MS and Family, MS and Marriage, Riding Out a Relapse

15 responses to “It’s a Wheelchair kinda day!

  1. Denise Allen

    Beautiful, you are so lucky to have someone who is that tuned in to you( for lack of better words). The two of you are a blessing to each other.. Remember life is not about a destination, it is about the journey and you have someone to travel with:-)


  2. Denise you are right, about all the above.
    Thanks 🙂


  3. Lovely. 🙂 Rock that chair, girl. Before I had MS, I worked with sick children. We had a mom who decorated her daughter’s chair. She used tulle. It became less of a “chair” and more of an accessory. It certainly made me look at chairs differently. And I think it has made me stronger when I think about possibly needing one sometimes. It’s not the chair that makes the woman – but the woman that makes the chair.


  4. This is great to know:) I have been thinking of some yoga pants I saw once. They had a really cool design on the bottom of the pant legs, I loved them, but they were way too expensive. Like, ridiculously expensive. I thought of buying some Yoga pants and decorating them myself.Of course then, I would never what to wear them to yoga (LOL) While being in the wheelchair I did think, gee, no-one can see the cute stuff I’ve got on (if I bothered with cute stuff). Then the idea came(BAM!) Wouldn’t pants like that be cool for people in wheelchairs? Their fashion statement would be down low and totally visible then!

    Anyone who wants this idea it WELcomed to it. They have great fabric pants at most craft stores. I would love for someone to do it and send me a pic!


  5. Oh that would be too cool! That’s an excellent idea!! I love do it yourself stuff. It would be way fun if some of us MS blogger girls could get together and create a blog for do it yourself MS things. I made some iv cozies for when I do solu. My kids don’t like to see it. But putting a felted cupcake slip over it made it less scary.

    I am pretty crazy busy right now trying to meet a book deadline and punching out a line for a wedding gown designer. But if you are ever interested give me a holler. Being a teacher, I am sure you could come up with some great ideas!


  6. You are waaay ahead of me on the energy scale, and I think that has very little to do with my MS:)) Most people , mufti-task, well I’ve perfected the art of, mono-tasking (LOL)
    The kids growing up really helped!


  7. 🙂 Well in a house of five kids it’s kind of get with the program or get ran over by ten herding feet. lol 🙂 I totally get the mono-tasking though. I used to be able to do multiple things at once. But concentrating when I write especially is something I have to do more of now.


  8. I grew up in a house of six kids 🙂 the beauty of being the “Baby”! No one would dare run over the baby (LOL)


  9. Oh, cool! 🙂 You are right . . . no one would dare run over the baby. lol 🙂 It’s rare to be from such a big family. I may be biased but I think they are awesome.


  10. Tanya-Marie

    First this blog makes me smile. My husband laughed at this entry saying sounds like someone I know. I laugh asking Not me lol. I haven’t needed a chair
    but have a stick (cane) I have to use if it’s too hot or I’m walking far. I got the brightest one I could find at the store neon blue.
    I say should I have to get a chair I want it orange with a Dukes of Hazzard horn sound on it. They think I’m kidding I’m not.

    I describe the heat like this. It’s like you are trying to breath out but someone puts their mouth over yours and doesn’t let you take another breath almost sucking the life out of you.
    I try my best to explain how I’m feeling in ways my family may understand but sound crazy even to myself sometimes


  11. I’m so glad you shared this with your husband 🙂 I want them to know that they are not alone, and we aren’t the only ones acting like this. My husband seemed truly shocked that I think he drives like a 12-year old.

    You know, I never considered the heat and my lungs that day. I had an asthma attack. Thought it was just my lungs, completely detached from, my MS and the heat:/ In the past I’ve never noticed heat affecting my lungs, it’s always my fatigue, so much so that I EXpect to be wiped out, even the whole next day. I’m very conscious of being hydrated, but on a day like this, the last thing I want to do is fill my bladder. Port-o-pottys…ugh! We have so much to manage, it get’s complicated quickly.


  12. Horribly! Thank goodness for my cooling vest! Your husband sounds pretty cool too!


  13. Estizer, you would think after all these years of being married you would know the 1st rule of marriage, “The Husband is Always Right!” 🙂


  14. You silly Wabbit! When you’ve been married long enough, you’ll come to realize that we strategically let you believe that…JUST enough, so you’ll believe it (LOL) Your wife is doing a WONDERFUL job:)
    Love you guys!
    ps. Thanks for reading my post Patrick. I always know you’re there XOXOX


  15. Hope the weather is being nice to you 🙂


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