My Testimony from 2009

One of my greatest achievements was to become an approved Stonecroft Ministries Speaker. It was something I had longed to do even when I was in my twenties, but it didn't happen until 2009 - a large chunk of years later! Anyway, I was so honored to get to share my testimony with women all around central and West Michigan, and getting to see how God used my story to impact women for Him was both awe-inspiring and greatly humbling. Here is the speech I shared then.

Show of hands: How many of you have ever played in a casual sports league like they have for golf or bowling? Years ago I was on a bowling team – bowling is about as close as I ever came to sports. You see, I’m southern-raised, so pretty to me meant perfectly coiffed, perfect make-up, perfectly dressed and sitting quietly. I never saw anything pretty in sweating or exercising.  Of course, now I don’t see anything pretty in my upper arms.

Anyway, when I was in college I was on a bowling league. After about a week I learned I had a handicap; a predetermined number that the league added to my score every time I played. I never really got to know that much about it, but someone determined the degree of my disability in the sport … and stepped in to help out. I figured the league (or whoever) knew how hard it was to be a perfect bowler. It didn’t matter how bad I was – they compensated for what I needed. I gladly took the free points every week, happy for the help.

See, a handicap is assistance in recognition of a disability. We use the two terms inter-changeably, but the handicap is the help, depending on the type or severity of the disability.  There are lots of different types of disabilities – mental, for which we have medications; emotional, for which counseling and introspection can help; physical, which has a lot of assistance; and spiritual, which I think is by far the worst – being separated from God. It affects all of us from birth and none of us measure up. There is only one solution for spiritual disability, and oddly, that solution also helps in the other disabilities.

Though I didn’t know it back in college, I was living with an emotional disability – one that I think is common to a lot of people. It was how I felt about myself. I’d always seen myself as a handful, not a troublemaker, but a strong personality. And if you remember, my focus was always on being ‘pretty,’ and a strong personality didn’t fit the definition of who I thought I should be.  So I always felt ‘less-than,’ or just not quite good enough, no matter what. Because of this, when my grandmother would comment that I was too messy and that no man would ever want to marry me because of it, I really took it to heart.

I was a teenager the first time I saw ‘Taming of the Shrew,’ and I totally identified with Katherine, the lead character that no one wanted to marry because of her brusque personality. There is a scene near the end of the movie where her husband, to make a point about how he was the boss, calls the sun the moon, and she chooses to agree with him. From that point on, she is the best wife in all the land and all his friends wish they had married her. How romantic! I determined that I needed to marry a strong man, one who could make me doubt whether I saw the sun or the moon in the sky. I truly saw myself as a shrew.

Fast-forward a number of years, away from college and bowling alleys and into motherhood and a troubled marriage, and one day, I learned that I might have a physical disability – Multiple Sclerosis. In reality, I’d been dealing with MS really since I was about 17 years old. At that time there were all these tests and surgery and everything, but no real answers. Now, at 31 with two little boys at home, I had trouble controlling my legs, I had this weird numbness all over my body – it was like I was covered in plastic, and I had no energy to do anything. Again, there were lots of tests and speculation, but no real answers.  So while I looked for the source of the problem a couple of times, I couldn’t find the solution. Instead, I just got stubborn and told myself to ignore my weird body. Besides, my husband seemed pretty certain that my problems were because I was spoiled and lazy. I just wasn’t tough enough. I told myself I was in control as long as there wasn’t a diagnosis. In reality, of course, I just didn’t know for sure what was wrong.

Through all of this time, I had a personal relationship with Jesus Christ. I had realized my spiritual disability and asked Jesus into my heart when I was 11 years old, and I always knew He loved me and wanted to have a relationship with me. I still remember the relief I felt the moment I acknowledged that I wasn’t perfect and needed Jesus in my life. It wasn’t until I was in my twenties, though, that I really started getting more personal with Him. I had married the first guy I ever dated (remember – Gran had told me no one would be interested so I thought I’d better keep the one who was,) a guy with a very strong personality who seemed up to the challenge of being my husband. However, we were not on the same page, spiritually. In fact, it seemed that the fervor with which I ran to Christ was matched only by my husband’s fervor at running from Him. We weren’t playing by the same set of rules, and the rules I was trying to live by left me vulnerable to some manipulation that was not part of God’s plan for marriage. There was quite a dichotomy in my life – the things I learned at Bible Study and from my Christian friends, and the way things were in my home. No matter what I did, I just wasn’t good enough to please my husband the way I thought I Christian wife should, even when I did my best to believe that the sun was the moon. Ladies, it got to where I wasn’t sure of anything, not my health, not my sanity, not my own worth as a person, not if my husband loved me. I eagerly sought professional counseling and it helped me to identify the things that I controlled, and the things I didn’t. It also helped me see that I was probably wrong about my self-image. Outside of my home and away from my husband, Jesus was there, and His message was always the same … I was precious in His sight. Finally, I had to leave my marriage.

Ladies, if I had married more the way God had planned, it might not have come this to point, but in order to survive mentally and emotionally I chose to remove myself from the negative influence.  But once I was away from it, I was better able to accept that if I am precious in His sight, I must be OK. Over time, I started identifying some of the good things that make me who I am. I have to tell you, it was a little odd at first, but slowly I learned to accept myself, the good and the bad, with grace. To a great extent, my emotional disability was healed when I really embraced the idea that God made me and loves me, just as I am.

My physical weirdness continued through all of this, but I did my best to ignore it. If my right hand didn’t work right, I did as much as I could with my left hand. None of the problems my body posed lasted very long, so I learned not to get too upset about whatever was going on. Eventually though, there was an incident that sent me to the doctor. It was a bout of Optic Neuritis, where I went partially blind in one eye. Sure enough, it is a common affliction that results in a MS diagnosis.  While many people are quite stressed at being told they had MS, I was relieved. By the time I got the diagnosis, I had been conversely wondering and ignoring what was wrong for 25 years. I had a lot of questions for the doctor, and learned that many things I had lived with for a long time, like why I didn’t seem to be able to do as much as other people could in a day, were all the result of having MS. It wasn’t because I was lazy or melodramatic. It wasn’t something I could control.

After about a year I joined a group of people who also had the disease. It is helpful to be with people who understand some of the struggles that living with MS brings. I’ve learned a lot from people about managing the disease, and even how it impacts different people. We are very supportive and encouraging of each other, but there is also a level of acceptance that you can only get in the company of people who understand where you’re coming from. I also speak about my life with MS, including doing stand-up comedy about it!  Laughter is good medicine.

About two years after my diagnosis, you know what I got? A handicapped sticker! There were no questions asked on the part of my doctor; he didn’t wonder if I was disabled enough, or if I deserved it – I just had to ask him for it. It’s the same type of assistance I got when I was on that league – somebody gave me a handicap - acknowledging that I have a disability.

So how does my physical disability impact my life? It has closed some doors, to be sure. I have a limited amount of energy – I could never work a 50 or 60 hour week, and in fact there are times when I can do very little at all. And it is frustrating. I had dreams of being a high-powered, well-respected corporate big-wig. I also love to entertain in my home, but I’ve had to accept that I don’t have the energy to do very much of that, certainly not at night. But it has also been good, in a way. Do you remember the children’s song ‘Jesus loves Me?’ I have a real understanding of the line ‘they are weak but He is strong,’ because there have been many times when I’ve not had the strength to do what had to be done, but I’ve done it. And like we all budget our money, I budget my energy. I make very conscious decisions, every day, about what I spend my energy on. And too, knowing my own limitations has made me more tolerant of others (which, frankly, I needed.)

I wish I could stand here and say that my physical problems and my low self-esteem were the only things I brought to God to handle – but that’s not the case. I’ve made some bad choices and some huge mistakes, most of them after I had accepted Jesus as my Savior. I have also had tremendous losses and emotional pain that I endure only with His assistance.

As I mentioned earlier, I had to come to realize that I had some real spiritual disabilities that I alone was completely incapable of rectifying if I wanted to spend eternity with God in Heaven. God provided a handicap in the form of His own Son, Jesus Christ, to accommodate my disability.

Ladies, we are all living with disabilities of one form or another. Looking back on it, I’ve lived and am living with most of them. Separation from God is the greatest disability of all, and it is the only one that can be completely erased.

Spiritual disability keeps people from having true peace, from living a full life, and ultimately, from spending eternity with God. Some people spend a long time looking to identify the problem – knowing that something isn’t right in their life. Others can just get frustrated and decide to ignore it, but we know that isn’t the answer, either.  The Bible says “all have sinned and fall short of the glory of God.” To me, that means that God knows that it’s impossible for us to bowl a perfect game – to measure up, and He’s provided us a handicap, so that we might be permitted to have eternal life even though we don’t deserve it. But Jesus isn’t like a bowling handicap, ladies. Theoretically, I could practice and improve my bowling score. However, I can never earn or practice my way into Heaven. That is something only Christ can give, and He holds it out as a gift to every one of us, regardless of whatever we’ve done or haven’t done.  It’s mind boggling, isn’t it?

Do you have a spiritual disability? Maybe you just thought it was just the way it is and didn’t know there was help available.

Perhaps you’ve known for awhile that there’s something just not right, and maybe you’ve looked for the answer once or twice.

Maybe you’ve just decided to try to ignore it, because you’re sick of looking for a solution. I’m here to tell you that there is a way to get some powerful assistance.  

The first step is to recognize that we are born sinners and we will never measure up on our own.  Because God loved us and wanted to spend eternity with us, he sent His son Jesus to make a way for us.  Jesus was born of a virgin.  God is His father. He lived a perfect, sinless life and died on Calvary to pay the price for our sin. He rose again on the third day so that we who put our trust in Him as payment for our sin might have eternal life.  If you recognize that you will never measure up without Jesus, I encourage you to put your trust in what He did and invite him into your life. 

Jesus stands at the door of your heart, and knocks. He leaves the choice to you, you can answer the door, or not, but His greatest desire is to be welcomed into your heart. If after reading this, you have questions, or have prayed to let Him in, please email me at susans4Him@yahoo.com. I'd be happy to answer your questions and pray with you, anytime.

It's Different to be Afraid

2 Corinthians 4:16-18 NRSV

So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure,because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.

I have been quiet on my blog for awhile. I had planned to share about LaughFest and the nice articles that had been written as soon as I recovered from the performance. I had the outline and the links to the pieces and everything. Of course, before I was fully recovered the MS hit me with a new affront. I didn’t think that much about it, it was the same loss that had presented when I was 31, leading to the first testing to see if I had MS. The new symptom was more intense, as happens in the Secondary Progressive stage of MS. I didn’t even report it to my Neurologist (Neuro) right away – it started on a Thursday and I reported it at about 1:00 Monday, thinking that they’d shrug and put it in my file. That’s not what happened, though. Sure enough my PA, Danita, pulled out all the stops.

When she called me back less than three hours after I had left the message, she told me that I was expected at a local hospital that night, to begin a procedure designed to stop this latest attack. She gave me my room number, even. Well, that was unexpected.

Danita explained that this newer procedure, called Plasmapheresis, was being used on MS patients for whom steroids had not worked. I smiled at myself remembering how, while I hadn’t liked the short-term effects the steroids laid on me, the medical pro’s didn’t like that they hadn’t worked. I had to admit, once again, that their viewpoint was probably more to the point.

She gave me an explanation of what the treatment entailed – it sounded like dialysis to me – and said she thought my visit would be one to three days. I’m sure I said something akin to “OK,” reeling from this unexpected turn of events. I do so like being reminded that this disease contols how I spend my days! I informed my son Scott (my primary caregiver,) showered, packed a bag and ate dinner, and I was in the hospital room by 8:00 that night. Yes, they were expecting me.

The next day, Tuesday, was a whirlwind of activity, including a little surgery to give me a “port” in my carotid artery that went into one of the chambers of my heart, the first round of Plasmapheresis and the first 90 minutes of a three hour MRI. I never do three big things in one day anymore! I was exhausted.

Wednesday is when I learned for sure that my visit would indeed be ten days, as Scott had told me after his research on the internet. The hospital doctor explained that the port in my neck was susceptible to infection, and considering it went into my heart, they preferred I be in a very controlled environment. I could appreciate that, so I took a look around.  My room was nice, my view was pretty, I felt pretty normal, and food was served room-service style. I decided to look upon my stay as a sort of vacation. I enjoyed interacting with hospital staff, sharing my faith and encouraging them in their own. And I was humbled by the visits from friends and church representatives. I am blessed to be so loved.

The first few procedures provided some improvement to my new set of symptoms, but overall I didn’t see a vast difference. I did learn a lot about Plasmapheresis, and enjoyed how just three days after I learned a new word, I could explain what it did and why it is beneficial to MS patients. I will not share all those details here out of respect to readers who might not be the science geek I am. Suffice it to say it’s a blood-cleansing process that is done five times every other day, hence the ten day stay.

I was happy to get home at the end of it all. I had missed my cat, and after ten days of hospital food, I was glad to get back to Scott’s cooking – he prepared food at the Grand Hotel one summer! Very rapidly however, my symptoms got much worse. I can really no longer walk, even using my walker, and standing for more than a few seconds is all I can manage. Additionally, my eyesight is diminished, and I can now identify weakness in my arms, which I’ve never noticed before. This all presented within a week of my being home. For the first time since I heard I might have MS, I was scared. I never knew the disease could move so quickly. It can and it does.

At my follow-up appointment with Danita, I learned the Plasmapheresis was the last best hope to change the course of my disease. If it had worked I would just periodically go back in for more treatment. It didn’t. She explained that while there are some chemo drugs that are used by some, the risks far outweigh the potential benefit for me. I am glad I don’t have to decide to take them, since the pro’s don’t like them.

As I've shared before, I have Secondary Progressive Multiple Sclerosis. That means that wherever I have had a temporary loss in the past, I can expect to have a permanent loss in the future, including my intellect. Once again I am the cannonball that has been shot into the air, tumbling over and over with no control over where it lands or what shape it will be in when it does. I am grieving, again.

Then, yesterday and today, from two unrelated sources, the verses at the top of this post were presented to me. And I remember that this is all temporary.

"For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure"

I will mourn and gnash my teeth for a time; then I will carry on, because my eternal future is bright. Blessings to you.

God is so good!

Wheelchair, Steroids and Me! Oh My!

Well, it’s been a few very different months for me, but I think I can share about things now.  

Within weeks of my last post (in July), my legs stopped working. The PA I see at my Neuro’s office suggested IV steroids, which I had declined in March. I went with them this time, thinking it was a responsible move after falling 3 times in 8 days! I had been on steroids twice previously, but those were oral, where you start with like five pills a day and taper down to one pill over 5 days. This time it would be 1,000 mgs per day, for five days in a row. Since I no longer drive, they arranged for a nurse to come in everyday to give me the infusions.

Sure enough, I don’t play well with IV steroids, and after a trip to the hospital (I had watched my heart beat all night,) where the heart specialists couldn't be bothered to consider that I had a reaction to steroids, a flunked stress test and a heart catheterization, I was $500 poorer and STILL in a wheelchair. Oh – and IV steroids cause some wicked withdrawal symptoms. 

On the plus side, I now know that my arteries are pristine, they are configured in such a way that I will always flunk stress tests. So there was a lot of anger, frustration, confusion and just about every dark emotion one can have throughout August and September, and even a little into October.

I permitted those feelings, something I have not always known to do. But I’ve learned it’s good to name how you feel (the same way you name a demon that can bug you) and get familiar enough to be able to process it and ultimately let it go, having gained from the experience. Now I already knew I didn’t care for a loss of control, but in general what I learned this time was A.) Feelings are not bad for you to have; and B.) They don’t control you if you control them. Yes, both of these were new to me at 53!

Eventually I was able to get back to being the Susan I want to be – the one that can see the God things in the midst of all the horrible realities, and appreciate the helps that are available to people like me. It’s easier to accept using a wheelchair full-time when you realize that you don’t fall anymore (easing your son's stress level) and that your body hurts less since you’re not forcing it to do more than it can. 

So here at the end of January, I’m lined up to get a power wheelchair that is going to be perfect for my needs – there’s a clinic in town that specializes in just that. I’ve had Physical and Occupational Therapists in to suggest more assistive devices (that my wonderful brother bought for me,) and to my great relief, declare that I don’t have to move out of my place right now. It was really beneficial to hear their evaluations of my condition, since they have more experience in these waters than I. They have suggested I look around and identify where I want to go when I need Assisted Living, as that is almost certainly in my future.

Part of my confusion during the summer and fall of 2014 was that I felt great. I could think, the legs didn’t hurt, they just didn’t work…it was nothing like my situation in 2011. God had given me a book to write just before all the medical stuff started, and I am working on it as I write this.

And, for the first time in many years, I was able to craft most of my Christmas gifts, including making packs of greeting cards for people to use. Of course making the cards took a lot longer than it would have when I was less affected by the disease, but I had the mental energy to be creative and to think through the step-by-step process for each card, and the hand control to complete the tasks! The picture below shows some of them.

Lastly, I am performing stand-up for LaughFest again this year! There’s an outside chance that I might even have my power chair in time for my performance.

Seriously, who can complain?

Horses and Zebras

I've neglected my blog for a few months, but that doesn't mean God hasn't still been teaching me things through my experiences with MS! This is the loudest lesson I've recently received! I promise I'll share more of these lessons in the coming weeks.

There’s a physician’s adage out there that says “When you hear hoof beats behind you, think horses, not zebras.” It advises that, when seeking to identify the “why” behind a symptom, to first test for the most obvious causes.

Alas, my personal medical history is chock-full of zebras: My puffiness during pregnancy was pre-eclampsia that nearly cost me my kidneys. My post-partum problems were not a simple depression or even an infection, but was in fact undiagnosed MS. Later, my “female problem” was not a result of age or stress (both had been suggested by two different doctors) but rather ovarian cancer. Even when I went to my doctor to find out why I had gone partially blind in one eye, I was told “That’s not the way MS usually acts, so you’ve had cancer?” And we mustn’t forget that it took 25 years and three Neurologists to learn I had MS in the first place. Lots of zebras.

 I have had a single time when I’ve sought medical assistance and been given a straight answer as to the cause of a symptom that had a known, practiced solution – a bad gall bladder. Until last week...

See, I awoke that Saturday morning deaf in one ear. No big deal, really. It can happen in MS, I looked it up. Of course I didn’t call my Neurologist right away for two reasons: 1. it isn’t a relapse until it lasts 24 hours, and 2. it was Saturday. Woke up Sunday in the same state, and I must say I didn’t like what I was reading on the internet, and I was mad. I have been “busy” doing things the past few months – LaughFest, my nephew’s wedding in Connecticut, meeting with my state congress people to promote MS needs, attending holiday celebrations on Easter and the Fourth of July. I’ve done more in the past four months than I have in the previous two years – and now, I’m deaf in one ear?!? I felt like the MS was reminding me that it was in charge of my life.

I did call my Neuro’s office first thing Monday morning, but I had to leave a message, and then wait. And wait. And wait. The nurse called back at around 2:00 to verify the info I’d left in the message, then said she’s inform the person I usually see and get back to me. I asked if it would be yet today, and she said it should be pretty quick. At 3:30 I heard back, and the nurse advised that I call my GP rather than them. Really? The GP?

I told myself that at least my situation wasn’t urgent or that threatening, and that of course I would play the game that Medicare mandates, jump through the GP’s hoops, then spend the next few days getting an MRI, and hopefully start on a round of steroids and hopefully get some of my hearing back! Arrgh!

Tuesday morning I was at the GP’s office, waiting. I had been told the person I was to see was running a little behind – all tolled I waited about 45 minutes to see him. He stuck the light thingy in my good ear to see what “normal” looked like, then around to the bad ear. He started with the standard “never put anything smaller than your elbow in your ear,” advice and told me I had an occlusion in that ear, meaning it was blocked with wax!

I had a common problem that happens to lots of people! I was beyond thrilled and shared my joy with the nice guy. In a few minutes, here came the nurse to irrigate my ear, and in a matter of seconds, my hearing was fully restored! Boom-chock-a-lock-a! It was a horse, after all, and not some wild stallion with lots of buck and fight, but one of those ponies that gentle enough to give rides at children’s birthday parties. I can’t describe my relief.

Now at this point, you might be wondering if I’ve learned to expect horses, not zebras. I have to say I haven’t – I will probably still prepare for zebras as a matter of protection, but I will rejoice every time it’s a horse, and trust that God will see me through, whatever it is!

LaughFest Success!

I had a great time last Sunday night doing stand-up for LaughFest! Of course for me it wasn't stand-up - as I delivered my material from my wheelchair - at the last minute I found I couldn't climb the step to the stage. As with all things MS, it was on to Plan B!


I was touched and humbled by the number of people who came out to support me that night, and I offer a huge thank you to my son Scott, who managed the logistics of getting me to the third floor of the building downtown and back!

Alas, I forgot to ask anybody to video my performance, and I apologize to everyone who couldn't see it live. Shy of that, then, here is the material I wrote for the event. I didn't do everything verbatim, but I managed to deliver the gist, and I got lots of laughs!


Hey, at least I didn’t pull a Jennifer Lawrence getting up here! I am blessed to be an Ovarian Cancer survivor June 2^nd will mark 17 years cancer free and what better way to thumb my nose at it than to laugh! Now I also live with MS, an autoimmune disease, so at one point in my life my immune system was too busy attacking my brain to fight off cancer – in short my immune system sucks.

I’m a southern-born girl whose plan was to marry well and throw parties. Seriously. I had my china pattern selected by the time I was 15. Girls from my town don’t get married without a china pattern no matter how big that baby bump is. I had it all figured out.  These hands were going to arrange cut flowers (that someone had brought in from the gardens) and write notes in the morning room. Yeah. Right.

Maybe part of my problem was that I am a contemporary of Princess Diana – man was I jealous of her – she was always out-doing me! The clothes, the pomp, the castle she got to decorate, the fact that she had 10 inches on me…and she apparently didn’t have to worry about bills - oh man I wanted all that! Our lives were on an eerie parallel – she was just weeks older than me, we married within twelve months of each other, we were pregnant at the same time, and we both had two boys. Her marriage started smelling before mine. Then the year I was diagnosed with cancer, what did she do? She died – even then she topped me! I dunno, maybe I’m competitive.

You know, I’m not in favor of the Princess thing that that big theme park pushes. They have that full line of princess of toys and bedding, and when you go to one of those parks, you can pay big money at a special store where you can make your little darling into a princess for day, even if she’s 23 years old.  But really, I don’t think America needs more women thinking they are princesses.  Too, when that little girl gets into her mid-20’s and comes face to face with the reality that she’s not a princess – it just really hurts.

OK, so I may not be a British Princess, but I am a survivor who gets to laugh. TY for laughing with me tonight!

I am blessed!

Who’s the Girl with Plans for 4 things in the next 3 Months?

I’ve come to a place where I’m daring to go ahead and commit to do things – which is really a big deal. It started with signing up for a Wellness class through the National MS Society. It was six classes on Tuesday nights, and I was able to make five of the six! It was wonderful to meet new people, ones who are walking (figuratively) a walk similar to mine; to receive and offer encouragement. It was invigorating and validating, and I really enjoyed being with people like me.

It was at one of these classes that I was encouraged to sign up to do stand-up for Gilda’s LaughFest – a fund raiser for Gilda’s Club of Grand Rapids. If you haven’t heard of it – it is the nation-wide non-profit organization designed to help everyone who is dealing with cancer. It was started by Gene Wilder in tribute to his wife, Gilda Radner, who was taken too early by ovarian cancer.  

A few years ago they started LaughFest, where big name comics come into our little town and perform in a ten-day festival at different locations. Past performers have included Bill Cosby, Whoopi Goldberg and Betty White, and this year we have Chris Tucker. I have done stand-up off and on for years, and have wanted to participate in LaughFest since it came about – but have always been too physically maxed-out to consider it. Well, with this new encouragement, this year I submitted my application.

To be fair, I front-loaded it with the fact that June 2^nd will be 17 years since I was diagnosed with ovarian cancer, and laughter is a great way to thumb my nose at it. But I was able to share a bit a video from You Tube of me doing MS stand-up in Boston, proof to support the notion that I could hold my own on stage for this. And I was chosen to be one of the community participants! I get five minutes at The B.O.B. (Big Old Building) in Grand Rapids on Sunday night, March 16^th! Check www.laughfestgr.org for more info. Thankfully, the Community Showcases are free.

I was totally OK with being wiped out as a result of this, knowing that my next big thing wasn’t until the end of May, when my nephew gets married. I know that LaughFest is going to take it out of me, but so what? It’s my energy and I’ll use it the way I want!

Well, then I read about the MS Action Day, where people with the disease go speak with our state representatives about things they can do to make it easier for us. My mom has worked with state congress people her entire career, so this is right down her alley and I knew she’d love to do it, too. It’s March 26^th, an hour+ away from where I live. That’s only ten days after LaughFest, but so what? I’m doing it!

Then I found this little craft for Easter on the internet – little edibles that are so cute – but I have no grandchildren to justify the purchase of Twinkies and Peeps. Well, thanks to one of my new MS buddies from the Wellness classes, I might get to make some for a local coffee shop for Easter! Easter is the 20^th of April this year, so I’ll still have weeks to rest up for my nephew’s wedding in Connecticut - the most important "happening" of my year.

Who’s the girl with so much to do in the next three months? This girl! That I have the confidence to put these things on my plate – I can’t tell you how huge this is. Don’t get me wrong – I will be a limp wash rag for days after each one of these things. And a huge reason I can decide to do these things is because I don’t have to grocery shop, or cook, or clean, or try to work.

But to dare to agree to do so much in March and April, and make a wedding at the end of May is…?  I can’t even think of a word to describe it. Awesome? Fantastic? Wonderful? Exciting? Yes, plus.

Blessed. That’s the word. Blessed that I’m able, and blessed that I can trust that I can do all these big things. There have been many months when trying to do just one of these was too much to entertain.

 

God is Good.

Princess? Yes I am, just not the way I thought.

I was raised a princess. I grew up knowing that I was loved for just being here, with few stated expectations other than being polite and doing my best at whatever I did. I didn’t really know what “my best” was, because there was never a concrete definition given. If I earned a C in a class, but had done my best, my folks were OK with that.

My parents were very focused on making their children’s lives better than theirs were, working hard to provide for our financial “needs.” Alas, I learned that fine clothes, travel, and in general having the best of nearly everything meant that I was loved. Sure, my mom was away from home more days of the month than she was here, and when she was home she was usually sleeping or dressed for bed (which meant no going to do whatever I might like), but what I lacked in quantity of time I gained in quality (and quantity) of stuff. I felt sorry for my friends whose parents didn’t provide the best of everything, because that meant they weren’t loved very much. I perceived those parents to be failures. I was a princess because my parents loved me enough to give me stuff. By the way, this was not the lesson my parents sent, it was the one that I learned.

Well, then I got married. I had graduated from a good private college, but it was the early 80’s and jobs were non-existent, so I didn’t find one. My husband was making good money at his job, but with only a single income, we were poor. When I was single and living with my parents, I could use my income to purchase gifts for others – to show that I loved them. Now I couldn’t even buy good quality make-up for myself! To my way of thinking, my husband didn’t really love me because he couldn’t give me even the most basic good stuff.

 

Then we reproduced. Now I was a poor parent that couldn't provide the best for my baby. The embarrassment and shame were horrible. I was doing everything so wrong!

Fortunately, some good Christian counseling helped me identify the error in my thinking, but the harsh reality was still devastating to me. I WASN’T A PRINCESS! Good stuff was not just going to drop in my lap because of who I was. I was so disillusioned.

I did find some solace when it became obvious that my contemporary, Princess Diana, wasn’t really having that great a life either.

My recognition that I was a non-royal empowered me to take ownership of my life and myself as a person: I was very intelligent, I had a degree, and honestly had abilities and skills that made me a valuable, worthwhile person over and above the fact that I existed. Learning about the real Susan was far more valuable than being a princess.

For the next twenty-five years I was very anti-princess. I even did a bit in my stand-up about how bad it was telling little girls they were princesses:

You know, I’m not in favor of the Princess thing that that big theme park pushes, where you can dish out a lot of money and turn your little darling into a princess for the day … I don’t think America needs more women thinking they are princesses.  Too, when that little girl gets into her mid-20’s and comes face to face with the reality that she’s not really a princess – that just hurts!

I can’t tell you how many times over the years I tried to set other parents straight about the damage caused by perpetuating the princess myth. I thought it was a public service, really.

Then, too soon, I found myself resting on a couch in the hospice room where my dad lay dying. We’d been told it would be that day, so I didn’t want to leave, but the MS demanded I rest. Of course I didn’t sleep. Instead, God send me the last lesson my dad would teach me.

As I laid there, it dawned on me that Dad always referred to me as HIS princess because my very existence made him feel like a KING. I had spent a lot of time resenting being raised in a delusion, but really I STILL hadn’t understood my dad’s reason for granting me such a noble moniker.

Around two o’clock in the morning a nurse came by and announced that apparently Dad wasn’t going to die that night after all, that it might be later in the morning. I decided I had to go home and get some rest because the next few days were going to be very demanding. It was so hard to leave that room. Before I did, I went over to my dad and whispered “Your princess has to go home, but I love you, and will see you when I get to Heaven.” My dad had been non-communicative for about four days, but when I said those words, he responded with three utterances, which I took to mean “I love you.” I was glad there was no traffic on the expressway; I was crying too hard to really see.

When I woke in my own bed later that morning, I called the hospice, bracing myself for the words I knew I’d hear – that dad was gone. Instead, I was told that he indeed had not passed away. We figured that he’d gotten wind that people were predicting his behavior and would have none of it! He quietly passed one week later, on the anniversary of his first daughter’s birth. She died before her first birthday. It was "so Dad" to get to Heaven as a surprise for his first princess’s birthday.

So I’m not a real-life princess; I know I have real gifts and talents to share. I’m my dad’s Princess, and I can’t wait to tell him how much that means to me. And I’m fortunate to be a child of the Risen King, as that means so much more than being mere earthly royalty.

 

Spend the rest of this month embracing who you really are, spending time thinking about all your good qualities. That will be the best gift you'll get this season.

 

 

Merry Christmas

Lessons from the Words of Another

       

"What I have is a mission. A purpose. I am here to live the best life I can with what I have been given.

 

I am here to live out this human existence as a spiritual being... a servant to God and His people... before I head back home to Him.” Sara Frankl, Gitzen Girl

      This lady wrote my thoughts so beautifully, I'm sorry I didn't get to read her while she was alive. Her illness took her home early, but she made the most of the time she had. Google her name and see the difference she made while she was here!
     According to everything I've read, my disease will probably only shorten my live by ten years, so I don’t have the time constraints Sara had, but her statement is exactly how I see myself living the rest of my life!
     Yes, she was disabled and isolated, as am I, but she shared her thoughts in such a way that every believer can read her words and think "Me, too."
      My sister-in-law gets up early every morning to have her devotion and quiet time. I had carved out similar time throughout most of my adult life, but had no energy to make that time for the last fifteen months I was working. I was frustrated, angry and exhausted, and I knew things were out of balance. I was truly just living to work, and I actually missed my quality time with God.

     Perhaps that is one of the blessings of disability: the world's goals (Get! Make! Go! See! Do!) can no longer dominate the day's moments, so the Spirit's whispers can be heard and relished.

     I really think Sara’s stated mission is all of ours.The Holy Spirit whispers to you every day. Do yourself a favor and make time to listen.  If you don't have the time, your life isn't going very well - so CHANGE IT!

Find more of Sara’s thoughts the (in)courage devotional available through www.DaySpring.com.

 

Hard Stuff

I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. Psalm 139:14

 

Went swimming for the first time in four years yesterday – I got a scholarship to a Salvation Army Kroc center – the first pool that I could easily access. Very nice place, new swimsuit, Mom came to help. I was told years ago that exercising in the pool was good for people with MS – because you can’t fall doing stuff in the water!

 

I knew I had to be mindful of the time I spent in the water – too much and I’d wipe myself out. I just didn’t know that my legs wouldn’t kick when told to. I “pushed off” the way I always have, and my legs just hung there in the water. It was a surprise – another bad one! I had already noticed how my legs really felt the resistance from the water, but to tell my legs to do something, and them to just not was offensive.

 
The problem was not so much a lack of strength as that the demand for action wasn’t being received by the muscles. As much as I’ve always known that demyelization results in a breakdown in communication between head and muscle, there’s just nothing like seeing the results in action – or lack thereof.

You know, being only five feet tall, I never held aspirations to be great on the basketball court. As a child, I learned to accept that I wasn’t flexible enough to do a backbend like my more lithe friends could. Those things never really bothered me. But when my legs don’t move like they always did?  It’s a real hit.

I’m reminding myself that, like my height and flexibility, there’s nothing I’ve knowingly done wrong to make my legs like this. Still, my mind keeps looking for a solution to this problem. I don’t know that there is one. I will keep going to the pool, though. Who knows? Maybe I’ll regain some of what I’ve lost, even if it’s only a firmer waistline.

 

I’ve also been accepted into a Gateway to Wellness course through the MSAA, which will be held in a Physical Therapy setting, with a PT leading each session. I’m looking forward to learning more about my limitations, and what a professional thinks I might be able to get back. In THAT setting, I’ll be prepared to identify the losses and learn. It won’t be as much of a surprise as swimming was.

You know, I guess I’ve spent two years accepting the fatigue and cognitive issues, and the loss of some small muscle ability – like holding a pen or applying eyeliner.  Really, the cognitive was the hardest to take. Now that I’ve gotten used to those things and stabilized there somewhat, it’s probably just a healthy “next step” to identify the losses in large muscles. I just didn’t know how much there was.

 
In spite of this hit, I choose to believe that since I’m still here, God can still use me. He doesn’t need the parts that don’t work. He needs a willing heart.

But could you do something for me? Over the next few days, if you're standing while in the shower or while brushing your teeth, give Him a shout out - because you are fearfully and wonderfully made.  

God is Moving!

I've been trying to create a new blog post for weeks and it's just not coming together. It is rare that I can't write, but whatever I put down seemed so trite and too me-focused, which has never been the goal for this venue. God has been so present with me especially in these past few years, that I want everyone who visits this site to give Him all the glory because of what they see here.  It's a challenge when every post is written in the first person.

But God's recent movement has me so excited!

 

And a little intimidated, because it feels so BIG. I met the head of women's studies for my church this summer, and in a very brief conversation we launched the idea for an Online Bible study for physically disabled or shut-in women, facilitated by a disabled woman (me)!

 

Women will be able to go online and watch each video when it’s right for them, answer the questions posed at the end of each, then post their thoughts or questions in a private forum through Google Groups.

I was of course worried if the MS would stand in the way, and went to God in prayer. Would I be able to do this in a way that would glorify Him? That Sunday, the sermon was titled "Costly Worship" based on 2 Samuel 24, when David insisted on paying for what he was going to give to God saying "I will not sacrifice to the Lord my God burnt offerings that cost me nothing." 2 Samuel 24:24. Well, meeting the requirements of facilitating a new study will cost me, physically, and that sermon gave me the resolve to do it no matter what!

If you (or someone you know) are physically limited or shut-in and want more info about participating, I just need your email address - so let me know in the comment section! We will start on October16th.

God is so good!
Susan

 

The benefits of Acceptance

Guess what? My two year anniversary, June 21^st, passed and I didn’t even notice! That’s the day in 2010 when I accepted the reality that the disease had gone too far for me to continue trying to drive or work. I choose to believe that is a sign of progress – too busy living today to think about stuff from the past! Yeah, let’s say that.

So what am I doing in my new circumstance?  Not much!  I am continuing my lessons on living with grace. I may have said it before, but it bears repeating:

 

Acceptance is a huge part of grace.

Acceptance is not admired as much as it probably should be. It is only seen as a goal in the stages of grief – Denial, Anger, Bargaining, Depression, Acceptance, and in reading books on grief, usually speaking about the death of a loved one, it is seen as elusive. I guess it is bantered about in today’s culture a little, one should accept the ones who don’t quite fit the norms of society, but not much is regularly stated about taking an honest look at your life and accepting yourself, warts and all. In terms of introspection, we are all about “overcoming our limitations” and “never saying never!”

But I say if you want to live in grace, you have to first accept your reality. I have not always been good at this. Frankly, I don’t much care for my reality, and have longed for the days when I was doing good things for a good company, was part of the dynamic team of people making things happen, was respected for my God-given skills, and wore pretty clothes every day. Oh, and going to lunch at pretty places! But I digress.

Came across this picture on Facebook recently, and though I've seen it before, I finally understood what Mr. Hale was saying. It appeared the day after I was witness to some odd activity outside my apartment during that string of 95 degree days we had in July. A young lady, a young man and a baby kept walking past my slider door. The adults looked to be in their early 20s. The girl was on the phone, the guy was carrying the toddler. Back and forth they walked, and I didn’t recognize them as neighbors. After awhile, a police car pulled up and spoke with the girl and I heard her exclaim “I don’t know what to do!” through tears. Using my walker, I went out to the girl and offered her a seat on my porch, which was shaded. She then told me of her hardship – she wasn’t getting any response from a relative who lived in my building – and in fact, the lady had passed away in her apartment. Then the guy came back with the baby and told the girl that it was too hot to sit in the car, so I got them some ice water and invited them into my air-conditioned home.  It wasn’t very long before the police were finished and the little family could go.

I am only one, but I am one. I cannot do everything, but I can do something.

And I will not let what I cannot do interfere with what I can do.

I might still wish for the exhilaration I got from doing cool things with neat people in a corporate office somewhere, but I am grateful that neither my health nor my longing for what “should have been” kept me from doing something to help strangers in a time of need. I like to think that my ability to accept my reality made it possible for God to use me, just where I am. Maybe my reality isn't that bad after all.

Multiple Sclerosis takes so much

Multiple Sclerosis takes so much from a person.

That is a truth. An angering, putrid truth.

For me, the goal is to overcome the anger and focus on what I can still do, do it to the best of my ability, and always ask God to make it the best it can be.

A second cousin of mine was recently married. When I learned of the impending ceremony, my first thought was about a gift, knowing how limited my funds are. There would be no way for me to afford a standard wedding gift like dishes or a setting of silverware, and that stung. Almost instantly I hit upon another idea – to embroider some kitchen towels and attach a note about her great-grandmother, who was my grandmother. Gran is the one who taught me how to embroider.

I found the same embroidery patterns that Gran had purchased for me way back when, and carefully selected the towels and the colors of the floss I’d use for the project. I could hear my grandmother’s coaching as I stitched, and, as I do with all needlework projects, prayed for the recipients throughout.

I saved writing the note for the end of the project. I knew I wanted to “set the scene” for how I learned this craft, and share some family history. The note really wrote itself – and I was pleasantly surprised by it. I’ve learned that feeling usually means God did more of the writing than I did.

I had set a deadline for the completion of my project so that it could be received before the wedding, and I was gentle on myself on the days the MS kept me from my task. I missed my deadline by a day or two, but the package went off in time.

The morning of her wedding, my cousin sent a Facebook message thanking me for the gift, noting that she would be framing the note I’d sent. She said it was her favorite gift so far! I was astonished that she would take the time on the morning of her wedding to send me a message! My gift had struck just the right note, binding us together in a way unlike any of her “registered for” gifts ever could have. It was truly a God Thing!

Yes, MS has stolen a lot from me. There are many, many days when my goal is to get out of bed, or get fully dressed, or to brush my teeth (I sit down for that, you know). But that’s not EVERY day, and I so enjoy the good days!

The important thing to remember is that, whether it’s a good day or another wretched day, I’m doing my best, God is with me, and He will make whatever I do immeasurably better than I could ever have done on my own. And that's true for everyone.

Honestly, though

Over the past little while I’ve shared how God has made His presence known to me even as I endured the worst that MS has done to me yet. His presence in all of this has been palpable, and I give thanks every day, sometimes every minute, for His grace through it all. But I am not a Pollyanna, and confess that I have been really furious about how my life has turned, and continue to be broken-hearted about much of it.

In my twenties, the concept of the Holy Trinity, Father, Son and Holy Spirit was easy to accept for two reasons; 1). He’s God and can do it however He wants, and 2). I was already a daughter, mother, wife and just me all at the same time. Susan-the-mother saw the world much differently than Susan-the-person, and somehow knowing that I, a mere human, could be at least three different things at once made the trinity easy to accept.

Over the years I’ve honed how I see my “selfs,” if you will. There’s Susan-the-person, Susan-the-tired-four-year-old, and Susan-the-Child of God. My goal is to always be the latter, but it’s the first two that have been so angry and hurt and frustrated the last almost two years.

Susan-the-person still references the “To Do” list, and can be so disapproving of herself. She hasn’t published a best-selling book, doesn’t own a house, and has never thrown a grand party to raise money for a worthy cause. She doesn’t even have a passport. Heck, she’s never owned a new car! I could go on, but you get the idea. The plans Susan had made have died hard.

Even Susan-the-person can chuckle when Susan-the-tired-four-year-old (she’s wearing a dress and red patent-leather shoes) makes herself heard. She made a brief appearance last night, when my son, who could see how tired I was, asked if I wanted to go to bed. It was 8:30. Screw that it might be exactly what I need! The four year old wants to know why, why, why, and doesn’t like it no matter what! She is usually quieted when she sees she can win the battle she’s trying to fight. She is easy to appease with love and laughter.

Today, I am glad that Susan-the-mother made hard decisions that were so contrary to what Susan-the-person wanted. And, hindsight being what it is, I can see now the decisions that MS made throughout my life. So while Susan-the-person remains greatly unsatisfied, Susan-the-tired-four-old will accept the realities. But Susan-the Child of God can see how and why I got where I am, and what a good place it is for me. And Susan can be proud. Maybe that’s what dying to self is all about.

 

No Thinking Days

I kind of hate the days of no thinking. I don’t beat myself up about them anymore, but I miss all the things I could have done with a better day. At the same time, I realize that missing what could have been is a waste of time.

There is a reason I don’t do the things Susan wants to do. For so long I did everything in spite of the MS, and now I can do only what the MS permits. I have run the fences, tested the limits, and I pretty well know when I’m doing more than I should. It still stings that ironing is too much, sorting laundry is too much, and cooking is too much. It is nice, though, to know when I’m deliberately coloring outside the lines, so to speak, instead of being blindsided by the results of over-doing it. It is also nice to choose to do it, instead of all the years that I did it because there was no other choice.

And I don’t have to stand in self-condemnation for not doing more, or not doing better. All the years I compared myself to others, not knowing that I had a disease that knocked me out of the “normal” range. I always thought that old adage “don’t compare yourself to others” was something that was said to “losers” (me) so they (I) wouldn’t beat themselves (myself) up for their (my) failings. Now I truly understand that it is unjust, because I’m not like other people. I’m at the edge of the bell curve, and that isn’t always a bad place to be - but more on that later.

 

It is truly a gift that I don't have to force myself to perform, most days. That fact has made self-acceptance possible. Acceptance has made it easier to ride out these days, and to laugh at myself. There is a lot of laughter in my house, and I'm the cause of most of it. Why can I laugh? Because I know this is all temporary. Yes, it might continue for another thirty years, but that is still quite short in the scheme of things. And I can laugh because I am loved by a mighty God and by wonderful people. It's all good.

 

 

 

 

My Dad

Four years ago today, my dad went home. March 19th is also my parents' first child's birthday. She died before her first birthday, so it was totally like him that Dad would go to celebrate with her. Here is the piece I wrote for him when we knew he was in his last days.

My Dad

If I speak with the tongues of men and angels, but have not love, I am a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have faith to move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing.     I Corinthians 13

As we were waiting for the ambulance to pick up my dad on November 26, 2008, my mom turned to me in utter desperation and exclaimed “I’m running out of time with him!” As a happily divorced woman, I remember feeling slightly jealous and a little cheated at the idea that 60 years just wasn’t enough time to be with a husband. I also knew that God had a lesson in this for me, probably something about love being worth the risk.

 A week later, I was once again completely frustrated with my dad. I got that way a lot. This time, though, he had stubbornly refused to go to rehab for the second time in as many weeks. He was being completely illogical and going against doctor’s orders. I was so hurt that he would defiantly choose to hurt himself by doing the wrong thing. Too, Mom didn’t need all the responsibility of trying to take care of him, couldn’t he think about her for a minute?

He had provided the lamest excuses for not wanting to go to the rehab facility, and I had figured out that he was just afraid it was going to be a nursing home and would never come out. But see, I have a psych degree and I’ve had lots of counseling and know that you just have to name your fears to start to overcome them, so I wanted to help so he could do the right thing! I mean, let’s face it; the right thing is often contrary to what my dad did. His theme song was “My Way,” for pity sakes, so I carefully planned what I was going to say and went over to see him.

It took some conversation, but he finally got around to a sweet, beautiful truth. With some exasperation, he said, “Don’t you get it? I’d rather spend two weeks home with your mother than four or six weeks somewhere else without her.” And God let me see, once again, that sometimes there is more than one “right.”

One of my earliest memories of my dad is playing “Pickle” with my brother and me in the early evenings as my mom prepared dinner. He rarely said no to his family about any want, in fact, my mother got in the habit of not mentioning interest in things because John D. would move Heaven and Earth to get them for her. Then there was the infamous shopping trip the year I was 11, when Dad took me to Jacobson’s and purchased a fabulous summer wardrobe for me, spending all of the money Mom had allocated for his birthday present. She was mad, of course, but he just smiled and said, “Hey, I spent it the way I wanted to!” Whatever we wanted, he made sure we got, even if it wasn’t necessary or fiscally responsible. Contrary to his own upbringing, he encouraged my brother’s participation in football. I don’t think he ever missed a game – not a single one. He also made sure to hug and kiss us, always.

Another of my lifelong memories is people telling me how cute my parents are. It began almost as soon as I started going places without them, which in retrospect was pretty early. From the time I was six, my brother and I spent our summers in the small town were my parents met and married. Every year someone in town would relate the story of how my dad would take a rose from his dad’s “prize” bushes and put it on the seat of my mom’s family car when he knew she was in town. I would also usually hear stories of how my dad exasperated his mom, much to the delight of, well, everyone in town. Did I mention that this was a really small town? There was always a sweet story that people freely shared about my parents.

When I was a teenager I started hearing how great my parents were when I’d stop at Forest Hills Foods (I think it was Shoprite then) or Reilly’s Drugs. I was always so proud to hear people say “Your parents were just here, they are so cute!” Even now, when Dad was in the hospital over Thanksgiving, I was in the room when his nurse told my parents that she loved how sweet they were to each other, and how she wished she could just stay and spend time with them.

One of Dad’s nephews became close with my parents when he was grown with a family of his own.  He and his wife were touched by the partnership they saw in John D. and Patsy, their warmth for each other and their profound commitment. Their children also have wonderful memories of times with my parents, while they never really knew their own grandparents. Patsy & John D. even drove to Missouri to attend their eldest son’s college graduation – which blew the kid away! This is just one example of the love my dad freely gave to others.

My dad did things his way. His mom wouldn’t pay for college if he were married, and he wanted to marry my mom, so he refused to go to medical school. He wouldn’t take a traveling job that would have made lot more money because he thought it was important to be around for his children. He told his company he wouldn’t take a promotion that would mean a move because his kids were in high school and moving at that age could be damaging. He did his very best to put his family first. For most of his life, money existed to be spent, and he stubbornly spent a lot more than he had, especially if he was buying things for his family.

You know, the Bible doesn’t talk about having a “paid for” house, or a large retirement account. But there’s a whole chapter devoted to love, and my brother and I know what love is because of our dad. I have to say, I think my dad got that right.