MS Strength

It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support: www.bringchange2mind.org

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check.

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this: www.howifightms.info

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News

I have to admit that my feelings about my status quo change almost daily. No matter how much I try to rope in my moods and put on a mask of gratitude, I most certainly do not FEEL gratitude every waking moment. Just the nature of the MonSter I suppose.

I’ve become acutely aware of my feelings over the past several years and I notice a pattern: I go through cycles of low-level depression/anger every couple of months. It’s a vicious loop, but I imagine it just goes with my personal situation: being out of the workforce at the tender age of 38. I am not feeling sorry for myself or asking for sympathy, but merely acknowledging how I feel. Feelings ARE legitimate and with multiple sclerosis (or any other chronic illness) they can and WILL fluctuate, depending on the circumstances of the day. So I feel the low simmer of anger today as I sit here and feel underproductive, underutilized, and definitely underpaid! Where went that career I was promised in my early 20’s?…

A lot of days I DO NOT feel angry. I feel downright blissful and productive and appreciated. These are usually the days when I leave the house to volunteer or be with family and/or friends. Full days that remind me of how I used to be. Today is no such day. I need to self-start and motivate myself to study for a class test (I’m taking a psychology class which I do, in fact, love.) And some days I find this very tricky. I have also been sending out job inquiries with little response. So I stew….. I try to explain this pervasive feeling of anger / depression to others who don’t have MS and I don’t think I’m fully understood. The anger stems from a lack of utilization. I am like a slightly older toy, sitting and waiting for use because I am still mobile and physically viable, just slightly slow and gently worn. Under the right conditions and with a little care, I can work and be useful.

Here are some things I’ve found that really burn my Bunson:

• I look at my years-old clothes in my closet, and I wanna bag everything up and bring it to Good Will. But I haven’t any extra money– because I’m underemployed— to buy a new winter wardrobe. The same holds true when I wanna pitch all of my old housewares/bedding/linens and I realize my money’s already spent.
• I see some able-bodied person landing a journalism job outside of the home and I wish it was me.
• I make contacts for new writing opportunities and I hear nary a response! This one REALLY singes…
• I haven’t a grasp of where the day will go— too much free time— and I long for a no-brainer schedule.
• I KNOW I should be making a reasonable living as an educated, full-fledged adult and I am NOT.

Now I admit that a lot of this anger is trivial, but that’s the way it is. Some days are just not the “full-of-gratitude, I’m-successfully-fighting-my-MS, I-won’t-let-this-condition-ruin-my-mood” sorts of days. Nothing wrong with that. The feelings are honest and they too shall pass. But they are real and they have a right to be acknowledged.

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and I had just lost my job— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!