Ugly Like Me...

Stem cell treatment helping multiple sclerosis patients walk again. Hope springs eternal.

 

The greatest misconception I had growing up – that death was the worst-case scenario in ANYTHING. You think that’s it. Death is the worst. Wrong. And that’s my opinion, well it was then. Feel free to feel differently. Quadriplegia is my worst-case scenario now.

It was death until the prognosis of quadriplegia walked and and MS and spinal disease took away my legs. The legs that got me though marathons, through teaching, through running after babies. Through life.

There was nothing so fear inducing than picturing the rest of my multiple sclerosis life as a quadriplegic. I always thought death would be the scariest. It isn't for me anymore.

This prognosis did lead me to conversations with God, an exploration of faith and trust and mercy and Grace. Many opinions have changed. Going home to God and Christ (sorry to those who are not of this faith or any, I have to share because it's crucial to my journey) isn't that scary to me. There is peace and eternal rest for me there.

BUT, the idea of me having zero control of my body, with my husband gone…is my worst fear.

I have that one-time love. The kind my friends punched me in the arm over and wish they too found that “one”. I do feel guilt that I was blessed in this way, through no good deeds of my own. I was an asshat in my younger years. I made mistakes. Chose all the wrong things, until he walked in the door and our eyes met.

He was the one thing I got right. But it wasn’t a choice. We both looked at each other like we just found our long last homes. It was written somewhere else. We were characters, not the authors. And we were found. So my life, began in many ways, with him. And it, I pray to God, ends with me in his arms. The other possibility is he goes first and I’m a quadriplegic, alone, exposed and vulnerable to men who are not him. People who are not him. My mind runs amuck with all the awful possibilities.

Like with my family is HAPPY despite the prognosis possibilities because we are happy. We are cozy. When MS hits us hard, we get tighter. The circle closes like a football team before the next play. We huddle warmly, put our arms in and shout, “We are still TOGETHER and have everything we need!!” Life is good. WITH him and the kids.Life without my soulmate and protector and best friend beside me, scares me beyond anything.

So we do have a great life, even when it's hard, but it doesn’t mean moments of MS terror don’t sneak in at night when I’m alone. Every night, the door that opens the MS terror – is me attempting to wiggle my toes on my right foot.

I know I shouldn’t try. I know how much it scares me. I can’t resist.

Imagining me willing with every bit of everything I have and am, to wiggle the first three toes on my right foot. Nothing.
It sounds small. No biggie, right?

Until it’s you. It is the scariest freaking thing. I can’t wiggle my toes on the right side. Sometimes I get so so frustrated, I throw the blankets off and use my hands to wiggle them. Other times I lay there, paralyzed by the fear on every level, and just listen to my husband and his breath beside me as he sleeps. I focus on his breathing until it calms me to sleep.

Side note: Some of us are in different places. I know some people who are doing great things with MS, physically. Great, yes? The only problem, as someone who has it in their spine and now spinal disease - do not give me a lecture of will. So many have implied if I had had the will, I could beat this. So many of my friends had great will and lost their battle, to MS, to cancer. If this was about WILL, I'd have a cure.

I have fought this disease for years - refusing to file for permanent disability when my doctors said I had to SEVEN years ago. I couldn't continue teaching, started my own company and became a writer. Published a book, working on the second. Please, don't give me any great WILL lectures. You are blessed that you can use your great will to conquer this, but it doesn't mean that others, with a more progressive form, aren't strong-willed. That is my biggest pet peeve among my peers. People comparing their wellness to others and believing it's their awesomeness that makes them prevail. It's insulting. It's a mixture of will and your disease behaving. many of us don't have that fortune. We have will alone and, sadly, it is not always enough.

Okay, back to paralysis and wiggling toes. You don’t know how scary the loss of even the smallest parts of your body is terrifying, until it’s you. That's the bad, sobering reality.

The good news– researchers in Britain have used patients own blood to create stem cells, rebooting their immunity so to speak, and it’s reversing paralysis in some of the patients in the trial. Patients who have been paralyzed for years, are walking!

The Guernsey Press reported:

About 20 patients have received bone marrow transplants using their own stem cells in a clinical trial at Sheffield's Royal Hallamshire Hospital, which is also being run in the US, Sweden and Brazil.

Some patients who were paralysed have been able to walk again.

Professor Basil Sharrack, from the hospital, said: "To have a treatment which can potentially reverse disability is really a major achievement."

So I am keeping this short – hope springs eternal my friends. Hope is here. It never left. With every horizon, there’s hope and don’t ever let go of that. Hold on to that instead of doing what I do with my toes at night, scaring myself. Hold on to the hope and let that lift you up until we are all lifted, literally, up from this disease. Cradle this as you fall asleep at night, and not your fears.

Mondays typically are seen as the ickiest day of the week. But not this one my friends. Not with this news.

 

Cloud windows and coffee.

I knew what yesterday was. One of my favorite peep’s 40th birthday. Today I saw January 13th, and the number stuck out. I have something important to do? What the heck is it?

My first meeting being an advocate for children transitioning out of the foster care system! It made sense. I have a Master’s teaching kids with special needs in urban environments. My career before my illness was about students in urban environments. Many were in foster care or group homes. It’s like, a chance to go home. I’ve always been pulled to children in need. It’s like I need to be needed in this way.

Something in me never rests unless I am helping. I was born this way. It just is.

I can’t teach anymore. But I can move my lips. I can’t get around all the time. BUT, I was assured If I need to be in court and can’t make it, they can appoint someone for me. I can advocate from my laptop, laid up. I can use my voice. My phone. My fingers. Until they go, I shall use them. Happily I learned there’s another advocate for the county who has MS and is in a scooter. We can volunteer together, in our own ways. It sounds little, but it’s a big deal to me. It’s important to me.

January 13th.

That was why it stuck out. BUT, then it hit me. Flashback to Jan. 13th, 2009, singing happy birthday to my 6 month-old son, we affectionately called “Meatball”, when I got the call. I had multiple sclerosis.

Today is my MS birthday!

I knew that date rang a bell. Wow. I don’t know how many years I have even paid attention to the date? As soon as it hit me, I hobbled half-awake, to find AJ to remind him it was his half birthday. Kids dig things like this, right? His face lit up and I could see him thinking, “That’s a thing? Do we burn stuff and eat cake?” And then he reminded me it was cloud window time.

The “cloud window” is an assignment from class. It’s a neatly-taped square, made out of four pieces of cut-out, black paper. A perfect square he looks through to determine the forecast for his day. Every morning he needs to look out his cloud window so he can report the weather to his class. I wasn’t sure if he’d dig this but he does. He loves leading us to the window and sharing what he sees. Turns out, I love it too. It’s a moment we share. He’s literal. I’m figurative.

I redirect him from the shadows, to the light on my MS birthday and his half birthday.

“The snow! It flurried Mama! There’s snow on the ice back there!” “Yes, yes! And the sun. Can you see the sun? Cold and sunny is kind of cool, right? It’s both!” We fist bumped and continued getting ready for our day.

Years ago on that MS day, our window was a cake. Shaped like a meatball, lit with one solitary candle. His forecast was brilliant and flickering, casting shadows of possibility on the kitchen wall. Mine was questionable at best. Even then, I still smiled and stared at the candlelight and called him to notice the beauty and not my cold. Much like today.

AJ’s cloud window made me realize how we do look out our windows and recognize reality. It was indeed 20 degrees out. There was ice. But I still had the chance to nudge him to notice the sun, the clouds, the shadows that represented the trees that are so full in the spring. They’ll be back soon.

My forecast wasn’t sunny when I was diagnosed. I had no clue how much MS would change my life, but in a good way. I was looking at it through a storm window. MS does suck. I’m not denying that. But it has also changed me. I am empathetic. I care about people, especially those who are alone. I advocate for those who can’t for themselves. And I do it, on my 7th year of disability. That’s my birthday cake. I can’t teach. It’s just my MS. But there are so many wonderful things we can do.

I won’t list all the "wonderful" things I have “done” in the past seven or so years (I'm laughing).  But I will say this: I have my own cloud window now. The forecast is sunny, even when it’s chilly. I have learned this through my walk with God and illness. Through holding the hands of my children on the way. My window is what I want it to be. My perspective is mine. I can change windows to find the light or the beauty, or to block the wind. I have so much control of this through perspective.

The power of perspective is awesome. It’s everything. Remember that.

I have also learned that gratitude is everything. Wanna be happy? Be grateful.

I have gratitude for the smallest, seemingly mundane, things that people probably don’t notice. Our home is filled with “thank you”s and “I appreciate what you did for me” is something that is commonly said. But it’s not just words – it is truly felt. Gratitude is a life saver. A happy maker. It’s been this cornerstone of survival. I've also noticed that my home is filled with people who have a similar gratitude in their DNA.

My husband handed me my coffee before I got to hand it to him. Wooohoo!  AJ’s cloud window. Zoe’s impersonation. That gratitude is us seeing the value of life and living a THANK YOU. It’s life lived in the sun. It’s that thing that takes you, mesmerized, in the flame of that birthday candle. It’s good.

Whatever you are living with, find gratitude in everything around and even in that (your adversity), and you’ll be ALIVE. Alive in a way most people don’t GET until they are given a date or a scope of time until it’s over. Truly living, eyes wide open.Surround yourself with people who truly get this as well.

I am so grateful to look out AJ’s cloud window. I am so grateful that I can still help, despite the MS progressing. I am so grateful…period.

It’s been a long, wild ride since my diagnosis. I often get approached by newly diagnosed patients, asking for tips. So many things to share, it's been hard sorting out what to say – but the most significant thing I need to share – time. Understand time. Understand how valuable it is. I stopped being “busy” and making “money” the way I was taught to, to heal. It wasn’t a choice, but I could have mistaken it as a choice until I was in a scooter three months after diagnosis.

I think the only reason why I’m walking, albeit with a cane, is because my family and I knew how “busy” was robbing me of my quality of life. Being “busy” will progress the disease, rob you of your mobility and strength etc. if you aren’t spending that time on quality ventures.

Henry Thoreau once said, and I’m paraphrasing, that even the ants are busy. Anyone can be busy. The question is, what are you busy about? That is an uber important question to answer when you are ill, even when you are well...it's important.

At seven years (is it seven or 6.5?) I can say, I’m busy looking out a cloud window with my son. I am so grateful that I can see the sun and point it out to his new eyes. I love his literal to my figurative. That my husband brought me coffee first. Tomorrow I will be grateful to beat him to the chase. That I can show up, in my own way, for young-adults who still need my voice.

Heck yeah! That’s living. No great explosions. No fireworks today. Sometimes there are!. But mostly, the fire, that thing inside a flame that makes us FEEL the force and become catatonic by its beauty, is in the small things. The gratitude of them. The single birthday candle. The cloud window. The coffee.

*Happy half birthday to Meatball, who shares his cloud window view with me. It always makes me grateful, and changes mine. You grew up with mama’s MS. I am grateful that you can see how we can live with adversity, and BE…happy, grateful, and giving.