A Tribute to My Mom, Who Makes MS Easier

Happy Mother's Day to all of the mothers out there, but especially to my mom! You may have read her guest post and seen me mention her from time to time on this blog, but I thought it high time to write a little bit here about not only just how great of a person and mother she is generally, but also about how incredible she has been throughout these last almost-10 years with MS as a support, an advocate, a caregiver, and a friend.

From The Daily Quipple. Check out today's Mother's Day quipple as well!

My mom is truly the best person I know. She's a woman of integrity who is full of compassion and love for others, and she has a fabulous sense of humor. My siblings and I had great childhoods, even during difficult times, because she made sure of it. I could go on and on with more details and stories about how great she is, but I'll move on to the MS-relevant side of things.

I realize I've never fully shared my diagnosis story or all that much about the early days with the disease on here. It's something I plan to do soon, in conjunction with the upcoming 10-year anniversary of my diagnosis. But I'll talk a bit about those early days right now. I was going into my second year of grad school in Michigan (12 hours away from home in Minnesota) when I knew something was wrong. I really had known something was wrong for months, but it wasn't until just before the school year started that things were getting worse and I knew I couldn't deny it any longer. I called my mom and told her what was going on and I went to clinic on campus that day at her behest. The symptoms weren't super active at the time I was at the clinic, and the doctor I saw pretty much just sent me home. A few days later, my mom was there with me. And she saw me very rapidly deteriorate before her eyes. When I went back to the doctor a few days later, I failed the neuro exam spectacularly and was told I needed to see a neurologist and have an MRI immediately. The diagnosis was pretty devastating to both of us, perhaps especially so because neither of us knew much of anything about the disease. My mom checked out every book in library about MS and we both did a lot of reading.

She was with me through the first steroid infusions and put up with me during my extremely agitated and sleepless steroid state. She drove me 12 hours to my home state to see an MS specialist neuro (at the recommendation of the local neuro).  She drove me back to Michigan. She saw me through more steroids. She ended up taking a leave from her job and essentially moved in with me in Michigan for several months, because I was unwilling to quit grad school despite the doctor recommending that I maybe should. Since I was having trouble walking and having trouble with my vision and with my bladder and everything was just exhausting and hard (and grad school is exhausting and hard to begin with) and I needed help, she was there. To support me in continuing to pursue my dreams and goals even when it was sometimes feeling pointless. To support me in dealing with my new life and this new strange thing taking over my body. She wasn't with me the whole year, but she was there quite a lot, and I don't think I could have done it without her. I finished the school year, having earned my Master's degree and a few extra honors to boot, largely thanks to my mom and her support.

That was only the beginning, though, and my mom has been just as vital since then. She's been there as I tried drugs that didn't work, and she's helped me as I made decisions about what drug to try next. She has stood up for me to those of the "but you look so good" camp. She's really the only one, other than my neuros, who saw me at my absolute worst, and plenty of my not--the-absolute-worst-but-still-bad times. She's the only one in my life who really, truly knows what this disease looks like, or can look like, up close. She has born witness, which feels like an important and powerful thing to me. It makes me feel less of that certain kind of lonely that life with this disease can make a person feel. She's in this with me, and has been from day one.

Thanks, Mom. For being awesome and funny and the best mother. But also for being with me on this wild MS ride, and making sure I don't fall off. For sharing the load, and then some. For laughing with me and crying with me. For continuing to support me as I follow my dreams and I pursue my goals. I desperately hope there's a cure for MS someday, certainly, but in the meantime my greatest hope is that all people with MS have someone like you in their lives. It makes it a whole lot easier.

Sure, I could have shared a nice picture, but I chose this one for a few reasons:
1. What am I doing?! Apparently turning around to look at something
my mom is pointing at. But why in such a weird, theatrical way?
2. This picture is taken in our favorite place in the world, Colorado.
And on a trail with especially important memories.
3. I didn't ask permission first to share a picture of her, and I figured this one
would be safe, as it's not too close up, and the focus is on my weirdness.
[But I'll take this down if you want, mom!]

The Hard Way

Today's HAWMC prompt: Write about a lesson you learned the hard way.

The lesson I learned: Walking is awesome. The carefully coordinated choreography of muscles, tendons, bones, joints. Like magic, step after step, no thought or effort required. It's a joyful, beautiful, soulful act.

As a baby/toddler, the transition to walking was a scary one for me. I just couldn't quite trust it, so I would only walk while pushing around my little green and yellow shopping cart. Eventually, though, I left the cart behind and found my stride. Walking...even running....full speed ahead! It was no longer an issue - just a tool that was there, ready to be called upon at any moment. And a humble tool, never making an issue over the miracle that it was.

So for 24 years, I walked, completely unaware of the awesomeness contained in every step. But then MS stepped in and taught me the lesson the hard way. 

So, now I know. Walking is awesome. I'm lucky in that the gift - the miracle, the magic - that is walking was returned to me after an on-again-off-again year of major walking challenges. Now, most days, I can walk without conscious thought or effort. But I have learned my lesson, and I now acknowledge and treasure my steps through the world.

My dear friends, walking is awesome. If you are able to walk, please join me in celebrating this lesson. As you walk through your life today, please take a moment to really think through the magic that every step is. Pause to acknowledge the blessing it is to be able to walk without having to think through every part of the movement, without straining with effort to move your body from place to place. To think only of wanting to go from here to there and your body following through - it's delicious, isn't it? Try not to take it for granted.

I also recommend reading Kate Wolfe-Jenson's wonderful poem, The Magic of Motion. It captures this "lesson" perfectly.

Uncertainty and the Fragility of Life

A very good friend of my younger sister passed away this morning. She was 24, a preschool teacher, full of life. Pneumonia, complications, death. So sudden and unexpected and unthinkable. I did not know her well, but news of her passing put me into a deeply pensive mood today.

I've been lucky in that I've not lost anyone close to me, other than a dear Grandmother when I was in junior high. Today, I've shed several tears just imagining how those close to this girl must feel today - her friends, colleagues, and especially her family.  Such anguish. I can't imagine how I would feel if I lost a close friend or family member. Devastating. I know it has been a very hard day for my sister, and I grieve for her and the pain this loss brings with it.

A loss like this - sudden, unexpected, someone so young - really reminds me how very fragile life is and how much is uncertain about our days. Especially early on, I spent much time worrying about the uncertainty factor in relation to MS. It is still certainly something I worry about, simmering away on one of the back burners in my mind. But just because we have a diagnosis that absolutely means uncertainty, how is that any different from the human condition itself?? None of us can ever know what tomorrow holds, or even from hour to hour, minute to minute. My sister's friend worked on Friday, had to go to the ER on Saturday, was rushed by ambulance to another hospital on Sunday and died Monday morning. Who could have anticipated such a tragedy?

From this deep well of sadness, though, comes the beautiful reminder to appreciate the present, to live every moment like your last, to leave every interaction with every person as though it's the last time you will see them, and to be grateful for all that you have, especially for all the people you love. Make sure they know how you feel.

May you stop dreading uncertainty, and truly accept that all is uncertain and that's okay. May you shift the energy of dread and worry to searching for and reveling in the beauty that is all around us - the people, nature, the arts, physical stuff, life. Hold that beauty like the fragile gift that it is and treat it with the greatest of care.

Thankful Thursday: I love my job!

I am so grateful for my job! I really love it - teaching and making music with people I like, and with a schedule that works with my heath and fatigue needs. It fills my soul with joy. It is essentially my dream job, a job I was certain MS had taken away from me. I had to give up the serious path in pursuit of this career and moved back home, where I did a bit of playing and teaching here and there, but also did various other things for work, as well as exploring new fields through online classes. And I just spent a few years figuring out how to deal with living with a chronic illness and its BFF, chronic pain. Then suddenly, out of nowhere, I got a call to see if I was interested in this job. So if I hadn't gotten MS, I probably still wouldn't have the job I wanted, but because I got sick and moved home, this opportunity came up. It's really perfect. So thanks, you dumb disease! No, really. I am so very grateful. But you're still dumb, and so is your BFF.

Who knows where the road will lead next!

Falling Into a Bad Mood

I fell the other day.

Not that unusual of a statement for an MS patient, perhaps. And at a certain point in my MS story, this statement would fit right in. After all, it was a fall that finally got me to go in to the doctor. (Because one entire leg being very numb for a few months and assorted other symptoms probably were nothing to worry about, right?) And there were a few more falls in the year to come, and far more than a few almost-falls.

But since Tysabri, I've been fall-free. And almost-falls have only occurred on hiking paths or icy sidewalks. Sure, sometimes my balance is a little iffy and sometimes my feet feel a little numb, but my life has been a fall-free zone.

Yet, I fell. Walking in a straight line on a smooth, flat road. No clue why or how it happened. It was all too fast, and there I was on the ground with a scraped elbow, knee and hand.

That first big, bad fall that sent me into the doctor? The doctor suggested that I had probably just tripped over my own feet like she supposedly did all the time. Then, I knew that wasn't the case. I'm not exactly the kind of person who goes to a doctor unless I am positive that something is wrong, and probably something fairly serious at that.(An attitude only strengthened by this doctor's suggestion.) But this fall? I think I probably somehow tripped over my own feet in a purely random, freak accident, happens to everybody every now and again kind of way. Or maybe it was an MS thing, after all, as I was particularly tired and in pain after a long day.  Even if it was, though, this fall? This fall was not a big, bad terrible sign of something bad in the way that first fall was.

But this fall sent me fast and hard back into that negative emotional space. It sent me into mental flashes of my past struggles and of a future including more and more falls, more and more need for assistance, more and more disability. It made me sad, mad, and scared.

But, luckily, time with this disease has given me a few tools for dealing with this kind of head space, and I was able to pull myself up out of the funk before too along. Along the way up, I took some time to feel gratitude for all of the amazing things my body can still do well and for the fact that I found a treatment course that has given me over three years of no falls, other than those involving icy sidewalks. This little flash of memory and/or imagined future reminded me that what I've got now is pretty great. And now, of course, is all we really have, so that's where I'm going to try to stay.

Thankful Thursday: blog love

It's been a while since I've gotten my blogger love on. So, time for some more gratitude!

I'm grateful for:

• Beth from Multiple Sclerosis & Faith
• Stephen from one life: livin' the dream
• Marc from Wheelchair Kamikaze
• Robert from The Gifts of MS
• Serina from Serina's Blog
• Cathy from Healing Through Multiple Sclerosis
• Mitch from Enjoying the Ride
• Linda from Diva on a Detour

These bloggers all offer me different things, but they all write beautifully and with great insight. They make me think, laugh, ponder, reflect and hope. Thanks, bloggers!

So far I've featured bloggers in this series that I've been reading for awhile. Next time I'll feature some of the bloggers I've only discovered recently.

Thankful Thursday: more bloggers

I'm writing this post early because by the time it's published I'll be off in the mountains where I always feel extra thankful! But in addition to feeling gratitude for glorious scenery, I'm also still thankful for some awesome MS bloggers. Today I'll feature some of the younger bloggers I feel some sort of generational kinship with:

I am thankful for Jodi of Jodi Bean's Blog. I love that she shares lots of pictures and stories from her life at work as a social worker and with friends and family, in addition to being a great advocate for MS. And, like me, she embraces the awesomeness of being an aunt to some very cute nieces!

I am thankful for Jenn of Losing It. A great writer who opens up about life and life with MS with honesty and humor.

I am thankful for Dan and Jennifer Digmann of danandjenniferdigmann.com. This couple takes their unique story and uses it as an advocacy platform. Positive and energetic, they embody the idea of not letting MS hold you back. And, they hail from Michigan, where I attended grad school, which holds a special, mitten-shaped place in my heart.

My Tysabri Treats

Grabbing a delightful infusion nap.

I love infusion days! This might surprise you. After all, who likes the idea of getting stuck with a needle and hanging out for a few hours as a (potentially dangerous) drug drips into your veins? I admit, there might be a few downsides, but for me there are a wealth of upsides to that Monday that comes around every 28 days.

First of all, I'm extremely grateful for the drug itself. Yes, the risk of PML can be a little scary, but for now anyway, the benefits outweigh the risks for me. Before I started Tysabri 3 1/2 years or so ago, I was having relapse after relapse. It was almost like clockwork, every month or so. Lots of bad stuff was going on: serious problems with walking, balance, and more. Shots weren't helping and things were not looking so great until my neurologist suggested I try Tysabri. I haven't had a relapse since! So, I am extremely grateful for Tysabri, especially when I imagine where I might have been right now without it.

When I began Tysabri, I had to travel four hours (one way!) to get infused. Super-supporter and trooper that she is, my mom faithfully drove the 8-hour jaunt every month. The trip, of course, required eating out, and since I received my infusions in a much larger area than I lived in, it was an opportunity to dine at some of my favorite places that I normally didn't have easy access to. Thus began the tradition of the Tysabri Treat. This usually took the form of lunch at Panera and a delicious smoothie from Jamba Juice. Mmmmmm. For the last year or so, I've been able to receive my infusions much closer to home. Sadly, no more Panera or Jamba, but the Tysabri Treat lives on. Before the infusion, we have lunch at a fantastic Thai restuarant and afterward pick up a Spicy Dark Chocolate Mocha or similar treat from Caribou. Especially as someone who doesn't eat out all that often, this little tradition of associating Tysabri infusions with a little treat makes me happy.

Now, on to the infusion experience. Infusion nurses tend to be super nice people. There are a few nurses in particular I rather miss from my old infusion center, but the gals at my current place are all quite friendly too. Nice people are always a great thing to have in your day. Nice people eager to bring you juice, cookies, warm blankets and more? Even better! Next, hospital beds are pretty awesome. I adore being able to adjust the height of my head and legs. I'd totally love to have one at home. I frequently fall asleep during my infusions, and it's often some of the best sleep I get! When I'm not sleeping, there's another bonus: tv with cable! I haven't had this luxury in years now, which is just fine as I watch the things I want to watch on hulu and netflix, but every now and again, I love the option of just scanning the channels or settling in for a little HGTV.

Finally, infusion days almost always remind me how very lucky I really am in the health department. Sure, I have an incurable disease and quite a few associated little problems...but it could be so much worse. I get my infusions at a cancer center, and I'm the only Tysabri patient they see. So many of my fellow infusion-getters are in a much more dire health situation than I am. And many of them suffer myriad unpleasant symptoms as a result of the infusions they get. I usually have a headache for a few days after my Tysabri, but it doesn't take my hair or send me running to the toilet! Seeing the bravery and strong spirits of so many of these patients always reminds me to be grateful for the health that I do have and for the drugs that do help me.

This positive piece of art hangs in the waiting room at the cancer center.

Sure, there are a few unpleasant needle pokes, but overall, Tysabri days are good days. I encourage all of you to use the opportunity of getting an infusion, or giving yourself a shot, or any other disease-related activity, to give yourself a treat and/or to find the treats that are already all around you!