Wednesday, April 7, 2010

First Things First

Where to start… the risk of sounding like a newbie at an XY Anonymous meeting…

Hi, my name is John, and my wife has MS.  I’m compelled to share our story in many hopes….in hope that it can bring a tad more attention to the fight MS patients and their families go through every day, in hope that it can help others dealing with this dreaded disease, in hopes that it can help me think through the challenges we face and make the right decisions, in hopes that it can show other caregivers they aren’t alone in their fears and that the cross we bear is one of love not disease, and that it’s our love that pulls and pushes us forward.  There are so many things I want to talk about, but first, here’s our story.

It was love at first sight.  I was working in a kiosk at the Golden Triangle Mall in Denton, TX one afternoon 13 years ago when this incredible girl passed by.  She was wearing a camouflage t-shirt that let her shoulder tattoo barely show under the sleeve, ripped up jeans, short dark brown hair, and had the most beautiful smile I had ever seen.  She was smiling at me.  About a half hour later she stopped by my place of work and there was the ever so awkward moment of sales clerk trying to help a customer who didn’t really need help.

I kicked myself for days not getting her number.

She wouldn’t get out of my head, all I could think about was this woman I saw at the mall, and my friends were definitely tired of hearing me talk about her.  Little did I know she was at that same time telling her best friend she saw the guy she was going to marry.  Luckily Denton, TX is a fairly small college town and it didn’t take long for us to run into each other again, this time she was with someone that knew me who drug her to my kiosk and made an actual introduction.  Courtney…. I now had a name to dream about along with the face.

Still no number, and I was yet kicking myself again.

You see, although I sometimes pretend otherwise, I’m really quite shy, and it wasn’t until about a month or so later with the assistance of copious quantities of alcohol that I was brave enough to approach her at a bar I frequented (where she happened to be on a blind date..ha!) and got her number.  I believe the line was “If I let you get away again without getting your number, I’ll have to kick my own ass”……although I bet it sounded more like “Ish I vet you geet away again wishout hetting your number I’llll have to kish own ash”….I’m surprised she answered when I called.  She did, and we’ve been together ever since.

We’ve had many wonderful experiences over the last 13 years, with our 7 year wedding anniversary coming up on April 13th as a reminder of one of the best.  Although life was kind enough to put us in each other’s paths, it isn’t always kind.  2006 saw Courtney starting to experience some balance issues, which we explained away as being tired or perhaps a bit out of shape.  She’s a photographer you see, and if you’ve never shot a wedding before you don’t realize the toll a wedding photographer's body goes through.  I assisted as a second shooter a couple of times and was crying like a baby the next day complaining how sore I was.  It seemed legit, it’s a taxing profession, and her balance wouldn’t get bad until towards the end of the weddings. 

Well, it continued to get worse, and we couldn’t explain it away anymore.  She had tingling in her right hand and a bit of numbness, her right leg was showing signs of foot drop (we didn’t know what that was back then), she had been experiencing bladder evacuation problems for a long time already, and the wall-walking was beginning.  After two sets of MRIs (3 days apart) and EVP testing she was diagnosed with Relapsing Remitting Multiple Sclerosis.  We had her tested for heavy metal poisoning and Lyme as well, both of which came back negative.  Lumbar Puncture was offered as a final confirmation of diagnosis, but she was very afraid of the procedure and we were told it wasn’t necessary to clinically diagnose her (not to mention she had a wedding to shoot the day after they wanted to do the LP).

Over the last three and a half years, Courtney has slowly progressed in disability, going from wall-walking to a cane and now to a walker (which still hasn’t stopped her from falling at times)…….this progression in spite of using MS drugs like Copaxone and Tysabri.  She has the common MS bladder issues like urgency, not being able to fully evacuate, having to get up 5-6 times a night.   Spasticity is pretty bad in her right leg, sometimes even popping up like a Pink Flamingo when she’s trying to take a step and locking into that position.  Lately she’s been having dizzy spells many times a day along with slight slurred speech (try saying that that 5 times real fast!).

No matter the challenges we face them together.  She bears the brunt of the disease, I try to make it bearable.... the best I can.  I used to wonder what our life would be like without MS, now all I really care about is that we’re together, and doing the best we can with the situation we’ve been dealt.  Don’t get me wrong, we’re fighting this thing tooth and nail, and in the days to come I’ll be sharing our current journey into CCSVI diagnosis and hopeful treatment.

Thanks for reading, and please come back……I have so much to talk about.


  1. Welcome to the Blog World. I look forward to reading your posts. Be sure to send this post to Lisa Emrich at Brass and Ivory, so she can get it on to the Carnival of MS Bloggers.


  2. Thanks Muff, I'll send it over to Lisa.

  3. Good one JM. I know it from TIMS, but she's lucky to have you and vice versa. No matter what comes, knowing she has someone to love and to love her is the really what it comes down to. The rest is noise along the way. I know you can't imagine Court taking this on without you, and she doesn't have to either and that says a whole lot about JohnnyMac. Good luck you guys, I hope you get the veins opened up soon if that's the route you go. I can't recall exactly since I don't spend much time on TIMS anymore. Take care bro and stand by that woman and always let her know you love her (I'm sure you do!). She's miles ahead of a great deal of MS patients and you being you helps her more than she'll ever be able to say.

  4. Thanks so much for doing this John! I feel so much more connected once again. I think about you guys so often and need to pick up the phone more. :-)

  5. I sent you a PM on thisisms regarding an IR who might help.

  6. What a moving story. It's a love story first, and only secondarily one about coping with illness. I look forward to hearing more about your journey.

  7. John,
    I talked about this very subject with my husband just last night. Like your wife I have the most wonderful husband and care taker. I don't know what I'd do without him. He financially supports the family, I've raised 8 children as a stay-at-home mom, planning to use my degree in social work before the speed-bump of MS got in the way. He told me yesterday (again), when I was voicing the guilt that I feel for needing him to do even the laundry, that he loves taking care of me. Like you expressed, he feels that it is us with MS.
    I look forward to hearing more about your journey.