Everything Is Hard

It’s Sunday night and I’m in the kitchen cooking the Blue Apron meal we ordered this week. We always serve our food buffet style so you grab a plate, fill it up, and then head to the table. My husband, Greg, is trying to fix his plate and he’s leaning up against the island where the food is hot and ready and he’s awkwardly holding a plate trying to scoop some sweet potatoes up with a serving spoon. I hear him quietly say, “everything is hard.” It feels like a punch in the gut and knocks the wind out of me. The only thing I know to say is, “I can only imagine.” Then I start to contemplate how we should be serving food to make it easier for him.

You see, this moment would be fleeting under normal circumstances and it may sound a little confusing. Why is it so hard? What’s the big deal? You’re scooping up some sweet potatoes. And you’d be right, it shouldn’t be hard, or a big deal, but it is, it very much is a big deal. Greg suffers from Progressive Multiple Sclerosis which is to say that since his diagnosis in 2007 he has continued to slowly decline from the disease and almost everything he wants to do physically is hard. I have some trouble sharing this part of our story because we are smack dab in the middle of it and sometimes when you’re in the middle of something it’s difficult to understand what lessons you might be learning in the struggle. 10401231_1118264276060_4826_nBut here’s the deal, MS is like having a 6th person in our family. It’s like having some needy, angry, unpredictable cousin hanging around every day and the longer they’ve been living with us the more numb we’ve become to their antics. But as Greg continues to decline it’s impossible to ignore and even my, “figure it out”, “never complain” husband is getting broken down week by week, day by day, from this horrible disease. We started walking as Team Webb in 2008 to raise money for the National MS Society, this picture was our first team. It was the only way I knew how to fight the disease, just raise as much money as possible, that would be my part. Greg walked with us for the first couple years but after being the last to finish in 2010 he called it quits and now hangs back cheering us on from the starting line.

When I met Greg in 1999 he was a bricklayer who had been recently promoted to project manager in the construction industry. He was a “man’s man” who enjoyed trying new things and being active, much more active than me. He played in an over 40 recreation men’s baseball league and enjoyed golf. 11667408_10207229579077038_797006020164330979_nI remember feeling frustrated as a new resident to Maryland that he always had somewhere to be and I was left to figure out how to occupy my time. Greg was and still is a physical guy. He likes to be outside, works with his hands, fixes things and creates things. He ALWAYS has a project, or three, and very rarely rests. One reason I admired Greg so much when I met him was his work ethic, he never seems to stop. That is one reason this specific disease is so terrible because it’s literally taking Greg’s ability to do the smallest things away from him.

When we found out that he had MS in 2007 Greg was only dealing with minor symptoms. He said he felt “off” or even like he had a buzz. He would lose his balance and his legs would randomly stop working. 18064_1354966513468_7054623_nTypically, this happened when he was really hot or tired or maybe drinking a little too much so it was hard to figure out.  This picture of Greg and Madi at her Girl Scout’s Father-Daughter dance was an indicator of his progression, he was already unable to dance so he got on his knees and made it work. He always does his best to make it work, even under the most disappointing circumstances.

Over the next 4 years, after the diagnosis, his symptoms would progress to severe fatigue and the need to practically drag his left leg as he walked. He couldn’t run anymore and he had hung up the bat, glove, and eventually the golf game. It also started to impact his work. His work demanded long hours dealing with a lot of detail as an Estimator. He now required more rest than his career would allow so in 2011 Greg went on long-term disability and never returned to a job. His full-time role would now be to manage our home and our three amazing kiddos that were at the time 7, 5 and 2. With Cooper so small and active we hired some part-time help to chase him around and made sure he was in a good pre-school. 416943_4770982631736_1336422046_nGreg managed well and I think he enjoyed being off the hook for a full-time career that he never much cared for. He took to house projects that included building all kinds of things, from birdhouses to a full-blown tree house in our backyard. Our friend and neighbor Dan would carry the supplies but Greg essentially erected this thing on his own, it was impressive, to say the least.

We look back at these pictures from 6 years ago and feel grateful that he could build something so cool for the kids. But now it’s become difficult to do just the most basic everyday things. He’s started to lose his fine motor skills and his entire left side is giving out on him more and more each day. The gift, for now, is that Greg is still driving. This continues to provide independence and empowerment to support our family’s needs by running errands and children from event to event. What he can’t do so well is get up out of a chair, button a shirt or write with a pen. To battle this, he’s bought gadgets to help, like fat pens that make it possible to write more easily, and special silverware for eating. He falls almost daily, sometimes multiple times a day and typically laughs it off while others watch in horror as he gets himself upright again. I’m surprised he hasn’t broken anything, it’s truly amazing.

There are multiple other issues that Greg faces, some more private and not for this blog but so many others that would feel endless to list. He finally broke down and bought a used wheelchair a couple of years ago and it was a blessing and a curse. Now we could go places together as a family but learning to live life with someone in a wheelchair is not an easy thing. If you’ve never tried to navigate the world in a wheelchair give it a whirl one day, it will change your perspective on the most basic life activities. 12977096_10209357866002881_947258259814057537_oI had to start planning for everything. Where we could vacation, where we could eat, what events we could attend that would be wheelchair accessible. At first, Greg wanted to manually operate his chair which meant I would need to push him a lot because there are a lot of hills in the world that you are unaware of if you’re walking. This was tiring and frustrating and caused a lot of bickering that Greg and I were not accustomed too. I was now his mobility “operator” and he did not agree with my operating decisions. So, to ease this frustration Greg got a new chair and a very cool motor that could attach when needed. And these days it’s always needed. Just last week Greg decided that he can no longer get around the house with a cane, and we have canes everywhere. So he has brought the old wheelchair into the house to use. This was another eye-opening moment that MS was continuing down the devastating and debilitating path.

We recently went to a party that was hard for Greg to get around. It was too small of a space to bring the chair but he couldn’t get his legs to navigate him around the house. This meant we needed to find a “spot” to settle in and hope that people would come to find us. This makes him feel very unsettled for many reasons I’m sure. He doesn’t want to be a burden and he wishes he could just go grab his own drink. But that’s not the way it works anymore for us. I decline several invitations these days because the venue will be too difficult to manage. 8705_10204080205184659_6978446661864205821_nI don’t want to put Greg in uncomfortable situations and it reduces the stress I carry trying to figure it all out. So we are homebodies more than anything these days and honestly, it’s not that far off from who we were before MS. But it’s different when you feel like you can’t versus making the decision not to.

Up until the last two years, Greg’s attitude was unbelievably positive. And generally, it still is much of the time. But when something just keeps coming for you so relentlessly it’s hard to maintain that sunny disposition. I have to stop and remind myself when things are a mess and I’m wishing we could be more organized around the house that for Greg to return something from where he got it in the first place is hard. Moving from the living room to the kitchen takes every bit of energy he might have at that moment and many times it’s not worth the effort to put something back from where he got it. I have to remind myself of a lot of things these days. Mostly that this will not pass, at least not in the near term and what Greg will face will inevitably get worse. We have to adjust as a family and make space for the changes and the needs and the sadness and the anger and the loss and that feels really hard.

There are times to take all of this in, the feeling that you can’t control what’s happening and take witness to the pain and suffering of those you love so deeply. But this has to be in moments and then it’s time to move on. For all the pain that MS causes Greg and our family, we have many things to be grateful for. This is where I choose to spend most of my time. I believe that you can find peace in gratitude. So I stay focused on what gifts we have and what is positive in our life, this allows me to feel at peace to some degree. We are surrounded by family and friends and our children are thriving so we know we have many blessings to count. But acknowledging that this is REALLY hard is ok too. Because for Greg everything is hard so I think I can find the strength to keep looking forward and make the most of the situation by doing my best to learn and grow from it. There are many lessons in our lives and I’m doing my best to take them all in, even if it’s hard. 12976788_10209357900843752_7641070281628970001_o

 

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