Tuesday, June 16, 2015

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.



Wednesday, May 13, 2015

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!

Wednesday, January 28, 2015

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?