Living with multiple sclerosis, Learning to make the world accessible, Loving life with all of its challenges

Accessible Lifestyle

A New Normal

Multiple sclerosis – It lands like a ton of bricks when you hear it. Slams into the heart hard enough to make it stop and drowns out anything else the doctor says. They keep talking but your brain is going a million different directions; is that what aunt so and so had? Or that one guy in high school’s dad who was in a wheel chair? Am I going to be handicapped? Wasn’t there a team at work who rode their bikes to fight that? Maybe I should have donated. Am I going to die? Not be able to walk? Be stuck in bed? A wheelchair? Will they have to use a tube to feed me? What about the company soccer team? Will I still be able to play? To go dancing with my friends? What exactly, is going to happen?

The Diagnosis

Dre’s mom had lived with multiple sclerosis for years, so he understood what it looked like, but that didn’t mean he had any idea how it was going to hit him.

Mentally, life changes the second the diagnosis hits. The sudden, very real knowledge, that things are different – you just don’t know exactly how. But physically? That’s the part that takes a while to catch up. In fact, the physical side might take so long it convinces you life can go on as normal. The doctor visit slips further into the past and perhaps, other than some tingling in your legs and blurred vision in your eye, life is the same. You might eat a little better, exercise a little more, and hope that what the doctors told you never happens.

For some, that might very well work. That’s the thing about MS, is it doesn’t matter if aunt so and so did have it, or that is what put your buddy’s father in a wheel chair, or it was your mom that had it – how it impacts each individual is as unique as the individuals it touches. There are similarities and patterns and trends that can be somewhat predictable, but ultimately the impact they have is different on every single person.

The Realization

For us, it sort of snuck up. Life was going along, the way it was supposed to, careers, kids, step-kids, house, dogs – the MS was there, but a lurking annoyance. Then things got stressful –  not normal stressful, overwhelming stressful –  at Dre’s work. It showed first in the muscles around his eyes, they drooped to the point where he could barely see out of his left one. The limp that had barely been noticeable before became pronounced and it was difficult for him to get out of bed. He did, because he needed to go to work, but it was a challenge every day. Then we went on a trip to the Mediterranean that we’d been planning for over a year. That’s where the MS forced itself out of the dark.

Traversing between train stops under the city of Barcelona it became clear that Dre’s general mobility was slipping away. The walk back to the hotel was painful for him to make and for me to watch. We knew the backpacking journey we had planned was no longer a possibility. In the next few days we struggled through the city. How do we enjoy the trip that we had looked forward to for so long? How do we  but come to terms with the reality of Dre’s handicap. It was the first time we had to face his disability head on as a couple. Looking back on it, we realize it paved the path for how we chose to live our life with MS.

Riding our bikes in Spain
Riding our bikes in Spain

It’s not to say that there was no stress, or fear, or worry as that week in Spain unfolded. Oh – it was there. But there was also a resilience that we didn’t even fully realize at the time. For me, an avid backpacker who had envisioned us trekking through Spain on foot, it was an adjustment to double decker bus tours through Barcelona and mini train excursions through France. For Dre, it was finding the balance to challenge himself to rent a bike and explore the ancient neighborhoods of the marketplace, or relax at the bistro when he was too tired to walk. It was a whirlwind – lovely and scary – and together, we came home stronger, with the recognition that we were entering into a completely new phase of our life.

Life Changes

It was shortly after the trip that Dre had to take disability, as he could no longer physically live the demands of his job as a restaurant manager. It was a career he loved, the only one he’d ever known, and it wasn’t easy to walk away. What do you do when your body betrays the identity you’ve developed your whole life?

There’s a scramble – find something that makes you still feel relevant, a way to give value to this world, support your family, find pride in yourself. But nothing you can do in the short term lives up to the fulfillment you received from the past.

No, the journey of accepting a disability is reinventing exactly who you are. Creating a new normal that accepts the chapters that have closed and somehow writing the next ones. You could say there are phases – denial, grief, loss, anger, depression, fear, rejection, acceptance, joy – but they’re not phases. They come and go in waves. Sometimes at two in the morning, pulling you out of sleep wondering what will happen if you can no longer push yourself out of bed. Or the fear of thinking you’re not strong enough to lift your partner if they can no longer stand on their own. Or maybe the weather changes and your body refuses to respond when you tell it to go get the mail. Or when you hear a song you love, and realize yes, you still can dance and dance you will.

Dancing at our wedding
Dancing at our wedding

Yes, joy mixes with fear, happiness stirs into depression, and gratitude weaves its way through anger.

Life doesn’t look the same anymore, but how we deal with the challenges, how we cope, the choices we make to keep moving forward or let it drag us down – that’s what defines us.

It was a matter of wading through these challenges. Physical, mental, emotional – picking up pieces and putting them back together into a new puzzle.

Dre found his way back into the kitchen, the same place that had drawn him to the career he loved so much. He might not be able to stand for a full shift in the kitchen any more, but he could put the love and care into a meal for family and friends. Joy and fulfillment became his reward. He adjusted, and continues to adjust, to the the demands that multiple sclerosis puts on his body. Some days, energy is high and others it’s a struggle to get out of bed. And living with and loving a person with multiple sclerosis is not just an adjustment by the person with the disease, it’s an adjustment for their family as well.

A New Normal

Together, we continue to find our new normal. This is what has allowed us to not just move forward, but to grow closer and embrace life. What has been lost in monetary income from a full time career has been gained in time to go to soccer games that had been missed for work in the past. The realization that the lifelong dream of learning to scuba dive isn’t just something to leave on the bucket list, it is something that needs to get done because if not now, then when?

See, there’s a small hidden beauty in being faced with your functionality slipping in the middle of life instead of waiting until the end. You realize that life is happening right now –  this is the time to grab it.

Scuba Diving with Aaron in Cabo San Lucas
Scuba Diving with Aaron in Cabo San Lucas

There’s no waiting until retirement to take that bucket list trip you’ve been holding out for since you were a kid. Dreams can’t wait until tomorrow, or next week, or next year. Every day is one that will be forgotten if it’s not embraced with a vigor and passion in spite of our individual challenges. And when that happens, well, life can be very dreamy indeed.

And I suppose, in thinking about how we chose to live that week in Spain, this is how we’ve chosen to live our life. That’s not to say that there haven’t been all of the other pieces that come with living with a disability. The fear, and the anger, and the depression, and the worry still stir in the water. But that’s a part of life. Disability or not. The joy, and the happiness, and the love, and the laughter – they’re all there too.

And I guess that’s why we’ve chosen to write this blog.

In the past few years, we’ve learned to live our new normal. It’s amazing what life decides to offer you when you choose to take it. Living with a handicap has taken some options away, but it also opened new doors. And it’s those doors that we are looking to explore, open together, and share.

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