Pam Stewart
As my disease has progressed, Janet's role as caregiver has become vital in my life. Up until five years ago approximately, although my symptoms were increasing, they were not severe and I was feeling pretty lucky. I did not need Janet's help very often. Then suddenly, I went from a cane, to a walker, to a scooter, and then a power chair, but thanks to Janet, I maintained a certain level of independence and continued working. Then about two years ago, I discovered that MS was a painful disease. I went from working full time, to being out on disability. I have distinct memories of holding on to Janet as the spasms and nerve pain took over my legs and she made an emergency call to the neurologist.
Because of Janet's careful care and attention to detail, I haven't had a UTI in over 10 years which I've heard is very unusual for someone with MS in my condition. She does things for me in the personal care area that I've difficulty imagining other people doing and to be perfectly honest, I cannot imagine many people have a need for this type of care. My neurologist has advised me that I am an unusual case and the MS lesions have occurred in places affecting different bodily functions, and unfortunately for Janet, this causes me to need unusual help. Because I don't want to gross people out, I won't go into specifics. Trust me, Janet should be applauded.
But not everything she does for me is gross. She is one of the most sensible people I know, and with the proper tools she can make almost anything possible for me to use, even with my limited dexterity. Almost everything I own that is small or smooth and difficult to grasp, is covered with Velcro or special tape so that I can hold onto it and use it. A friend who attempted to use my digital camera found it difficult with all the assistive things that Janet had attached to it. I can use it and that's the whole idea. Anyone who grabbed my cell phone by accident would find it a bit unusual, covered with the grip tape used on the floor of bathtubs, but it works for me. She has learned how to do range of motion exercises, and when I become too spastic, she works my legs over. Sometimes she's the only one that can make them stop spasming.
I don't want to give the false impression that Janet is some kind of Wonder Woman, a combination of MacGyver and Florence Nightingale. She can get crabby and whiny. She zones out sometimes and you have to call her loudly in order to get her brain back from wherever she went in her head. There are some things in the house she can't fix that she refuses to give up on and they just sit there.
But honestly, most importantly, because of Janet, I'm not in a nursing home or curled up in a little ball. I've had moments in the past year or so when I wanted to give up, especially after losing function of my legs, losing my job and then losing my father all in a six month period. She gave me time to mourn my losses, then encouraged me to get back on track. With Janet's encouragement, I've started a little editing business to keep me occupied and have become more active with friends. She has saved me over and over again.
I want to thank the MS Society for the opportunity to nominate Janet Williams as Caregiver Of The Year and for providing me with a venue to let her know how I feel.
Mark Feil
I was diagnosed with the disease a year before our wedding, two months after we were engaged. Her maid-of-honor took her aside during the early wedding planning and asked Tammy if she was really going to marry me because it might not be such a good idea. My future bride was shocked and informed her friend that MS didn’t affect who I was, the joy I brought into her life, nor present any obstacles we weren’t going to be able to work through given our level of caring and communication.
In the 23 years since that conversation my MS has gotten worse, but her attitude has only brightened. She gently chides me when I try to do too much, and insists on helping with tasks most would consider minor, but to me are enormous. She always has time to assist me when I need it, even when I don’t realize I do. And she never lets me forget who I am.
When one does something for two decades it’s tough not to identify or even partially define yourself as being tied to that thing. If you’ve restored antique cars or cooked gourmet meals for that long it’s easy to take pride in those things, to feel a sense of accomplishment at how good you’ve become. Likewise, when you’ve been given a burden it’s hard not to eventually think of it as part of who you are. And when you’ve watched abilities you once took for granted slip away, sometimes suddenly, sometimes in an agonizingly slow and drawn out manner, it’s easy to take the new disability as a limitation not only on your body, but on your spirit. Yet, my caregiver refuses to let me go gently into that good night.
Tammy reminds me of the person I used to be before MS occupied my mind and body. She reminds me of my abilities, passions, interests, and accomplishments. She cajoles and challenges my spirit until I remember my inner core hasn’t faded, but shines bright still. My body isn’t the same, but she never lets me forget who I was and that I can still do what I always could with my brain and an ambitious attitude. She pushes me to not give in to the doubts and fears that haunt every MS victim. And it’s always different: she knows when I need it, and gives it to me in unexpected way and times. She won’t tolerate denial, but she personifies optimism.
Tammy sees MS as our disease, not mine, a problem we fight together. We love to travel and she is ceaseless in her efforts to find accommodations for my disabilities everywhere we want to go. She doesn’t view this as a burden, but rather, as something we need like a room key or a TV remote. It’s no trouble to her if it means we can get away. And yet, she hasn’t lost sight of who she is.
The ironic thing about my caregiver is that she doesn’t consider herself one. She doesn’t see my needs or me as any kind of a burden. She knows what I can do, and enjoys seeing me feel satisfaction at my small contributions, despite her shouldering a disproportionate share of household duties. She is also protective of my needs in public, putting a momma grizzly to shame when someone is inconsiderate of the disabled, a trait only myself and a bear cub can really appreciate.
My caregiver is the best because she does what she can for me, but doesn’t see me as a burden. She sees through the MS to the person within, and believes in and reminds me of him when my view of the world seems dark. And she takes my disabilities in stride like another spouse might regard their mate’s annual set of ever-thickening glasses or graying hair.
In short, my caregiver believes in me, in her, and in us, and proves it every day.