Marriage and MS

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Steve has asked me to guest write for his blog. So here it is, from the spouse’s perspective. As I write this, we are spending the day at Yale Smilow Cancer Hospital, where Steve receives his infusions. Walking around this facility, it’s difficult not to be humbled. I found myself strolling behind a preteen girl riding a motorized wheelchair sporting a Make-a-Wish back pack. I ached for the young woman, perhaps in her early twenties, laboriously shuffling along with her walker, determined to make it to the infusion chair on her own, as well as the brave young boy, no more than eight years old, hooked to the apheresis apparatus.

Once the nurse found Steve’s vein on both arms, and the process began, I sat with him to chat. It’s a boring procedure, as he must stay awake while squeezing a rubber ball to facilitate blood flow. I’m not good with blood, but I’ve become accustomed to bearing witness to such things. I’m thankful that I wasn’t there for the visit where the machine malfunctioned, spilling blood all over the place.

Steve and I have been married thirty years, and during that time we’ve gone through many happy moments as well as more than enough difficult times, thank you very much. I am also well aware that we are blessed, and many people have been dealt an even tougher hand.

I often joke that one man is quite enough, but in reality, I believe that marriage is sacred. Marriage is tough, and many nuptials succumb to real-world pressures. As young couples, we bask in the joy of a wedding, never really thinking about the actual wording of those vows. Few of us realize the importance of “through good times and bad, in sickness and in health.” If you stay together long enough, none will escape the bad times, and rarely will a couple avoid the sickness part. It’s not easy.

In our case, I was the partner with the chronic ailments – migraines and stomach woes were part of the deal. Steve was supportive and steady, plodding through whatever came our way. While I had more endurance for pushing myself through exhaustion and icky days, Steve was hardier. He went about his day, living on little sleep (I can’t even argue about it anymore), and enjoying good health.

So, when he first described his initial symptoms, I urged him to see a doctor. And when the initial diagnosis came back as “tight hamstrings,” I said bullshit, and sent him to another. When he was formally diagnosed with MS, my initial feeling was shock. My friends acted like it was the end of the world, and yet, a part of me knew that Steve would take this on as he had everything, strong and steadfast, placing one foot in front of the other. Little did I know, that this would become a metaphor for his life, as he struggled to simply get around.

Having said that, my husband can be a pain-in-the-ass, and MS has made him even more so. He refuses to get enough sleep, he pushes himself when he shouldn’t, and he argues with me every time I urge him to pass on the heavy lifting to our son. “I can do it!” he’ll say. He reminds me of a stubborn toddler. I try to understand that it’s a matter of pride and independence, but really, we all have to let go of those twenty-year-old capabilities.

Speaking of arguing, my once easy-going, go-with-the-flow man, isn’t flowing anywhere. I swear what Steve has lost in physical ability he has gained in debating acuity. I say black he says white, my apple, his orange. You get the point.

After knee surgery, I hobbled around with a cane. My shoulder ached, my back felt out of whack, and I couldn’t imagine dealing with this, Every. Single. Day. It gave me a brief glimpse into what he must endure, dragging that leg around, and yet, try as I might to be patient, I sometimes find myself annoyed when he blocks me into a corner, or walks right in front of me, necessitating a quick pivot around him. All in the name of balance. Or his lack of it. Secretly, I think there are times he uses his MS, perhaps not even consciously. “Honey, why don’t you just throw the cat food can in the garage bin?” “I want to conserve my walking.” I don’t always understand how six more steps could make a difference, but then if every step is a feat of balance, and he’s tired on top of it, I suppose it does.

And then there is the worry and angst. Worry about his health, worry about my ability to take care of him and our family, worry that this horrible illness might break his spirit; and angst from watching him struggle. Sometimes it actually hurts to watch him walk up the stairs. Other days, I want to scream out loud when I see him schlepping around the yard, dragging a garden hose or carrying something cumbersome. Sometimes I do. “Let Shodan carry it,” I yell out the screen door. “I can do it myself,” the toddler screams back.

And then, when I find myself exhausted and frustrated, and even a bit pissed, taking care of the house, my mother, my son, meals, laundry, house maintenance, I try to remember to take a breath and count my blessings. Steve is still able to work, and this affords us a nice standard of living. His MS has progressed, but not as quickly as it could have and may still. When I find myself panicking about the future, I try to embrace his idea that whatever may come will come. Most important, I know that we are in this together.

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Relationships

Relationships

Author’s note: Wouldn’t you know it? My wife’s post had more views than any of the others that preceded it. I’ll be hearing about that one for a while.  Be on the lookout for an occasional post from K in the future. In all likelihood, it will occur after the pain-in-the- ass husband has gotten her to the point where she needs to vent.

Let’s start by stating the obvious: living with a chronic condition sucks. It changes your life by not only placing physical limitations on what you can do, but also provides mental and emotional challenges that did not previously exist. A future that may once have had limitless potential is confronted with storm clouds as far as the eye can see.

All of which make relationships so important. Whether it’s your spouse, life partner, good friend(s) or all of the above, loving relationships make you feel whole and help distract you from your struggles.

Relationships are the ballast that keep our listing ships afloat. They are the mortar that keep our psyche intact. The people in these relationships accept us for who we are, not what we once were or may be. They pick us up when we are down, and kick us in the ass when we’re feeling sorry for ourselves. The sum of these are so vital for us to maintain our self esteem and keep plodding forward.

One of the many things living with something a chronic condition teaches you is how solid the relationships in your life truly are.

I’d like to believe that “in good times and bad, through better or worse, in sickness and in health” mean something, but I’m not naive. Health issues can break up the best of established marriages, and cripple new ones. They are especially corrosive when kids are involved. My MS journey validated what I always knew but perhaps never fully appreciated: K is an exceptional, wonderful human being and I’m lucky to have her.

In terms of relationships with friends, the only benefit of getting something like MS in middle-age is your friends are long-established, and you don’t need to hang with them as much because you have a history and have already carved out lives for yourselves. When you do connect, the atmosphere is laid back, low key, and comparatively mellow. The danger of being isolated and alone due to physical limitations is low.

Finding and/or maintaining friends and lovers in your twenties is much harder when a chronic condition invades your world. Appetites are insatiable at that age. You’re  ravenously exploring what life has to offer. Hanging with the crowd becomes impossible when you’re health weighs you down. While it might not be their intention, it’s hard for friends not to leave you in the dust in that situation. After all, life is a 100 yard sprint at that stage of your life. That’s hard to accomplish with an anchor chained to your leg, and you, tragically, are that anchor.

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As far as dating is concerned, not hanging with a crowd makes it difficult to meet and mingle, plus there is the issue of how much to disclose and when to disclose it. Honesty is such an important foundation in any relationship, but if you are forthcoming about a condition like MS from the start, you run the risk of not even getting out of the batter’s box. But if you aren’t forthcoming at all or lie about it, you’ll eventually be exposed as a liar and a fraud, which is worse. Most people aren’t willing to look past your flaws if you can’t be trusted. Talk about a dilemma!

Then there is the issue of feeling lousy or living with pain. It hard to feel or muster the fire and passion that’s taken for granted at that age when that twin-headed monster lurks.  My only advice is to be persistent, stay true to yourself, hope the best, and when you unearth that hard-to-find diamond who looks beyond all that, hold on as tightly as you can without smothering them.

Some may subscribe to the premise that my life took a cruel turn. I can’t deny  there is some truth that assumption, but I don’t dwell on it because my condition didn’t surface until I was close to fifty years of age. That isn’t ancient by any measure, and my retirement years will no doubt be different from what I hoped. Hell, my fifties have been a lot different from what I expected. But, I was able to live it up in my youth, and the years that followed the diagnosis haven’t changed my ability to enjoy life. I can live with that. The last decade has certainly had some challenges and difficulties, but the pace of my life was already beginning to wind down when MS came calling, making the bitter pill easier to swallow. I’m pretty chill when it comes to my reality.

If I were in my late teens or twenties? I’d be a basket case. The perspective my life experience has provided is extremely difficult if not impossible to grasp if you’ve been saddled with this at such a tender age.

My heart bleeds for anyone who has.