It’s funny how our brain can sometimes play serious tricks on us. But there are just a few things we some how need to be reminded of every once in a while. In the midst of a personal pity party that I held just this morning I said to my husband, “I feel like I don’t have purpose.” He responded, “When’s the next time you go to the psychiatrist?”
This particular party was held after I woke up and had no place to be. It dawned on me that nothing seemed to depend on my presence. To be more accurate, I had no job to report to. You see the last career I had I held in high regards. Though I wasn’t a surgeon that saved lives, I took pride in my job. My life revolved around it. I guess I thought it gave me purpose.
Due to Multiple Sclerosis, I was forced to leave my career behind. So where does that leave me? What’s the appropriate amount of time I should bemoan its loss? Because at this point I haven’t worked or driven a car since 2009! You probably know that as I remind us both constantly.
I forgot that though I’ve exited the structured working world, I have still maintained my worth. Thankfully a good friend reminded me of that. Thank God for friends. I totally dismissed the advocacy work I’ve done with the National MS Society. I know I’ve affected lives with them. I also completely overlooked my impact here with this website! Something that started out as a safe place to go and vent has turned into so much more. You move me. You humble me. You give me purpose.
I’ve been taught to shy away from thinking that something outside of myself gives me purpose. Similar to the way I did with my former career.
Thanks for helping me learn that painful lesson.
Living this way is certainly different than anything I’ve experienced before! This way meaning as a member of the chronically ill. I mentioned before that for the first 8 years of my MS journey the disease was relatively incognito. I was able to straddle two worlds. One is the land of the healthy and the other the home of the ill. Although now I often wonder if trying to appear healthy as long as I did actually stressed my body into the condition that I’m in now. You know working too much and too long. Exercising, getting overheated, and pushing myself. But this type of thinking gets me nowhere!
My problem is that I am no longer able to fake it. I used to secretly blend into both worlds. Now when you see me, you’ll immediately know that something is going on. I am still trying to learn how to function in my new terrain where all my flaws are out front and open.
Recently I was getting ready to meet some friends for lunch and it dawned on me that I wasn’t sure if the venue was handicap accessible. You would think that most places are accessible since we’re in 2012! But in New Orleans, Louisiana think again! Often businesses can get away with not making the required accommodations under the shield of being “historic” and unable to change.
Usually I just take a drive by and check out the entrance beforehand. It always makes me a little mad because I shouldn’t have to. This is why I feel as if I’m living in one world but begging for acceptance into another. For this reason I do a lot of advocacy work. I post a lot of it on this site and across the web. Maybe one day more people will know about Multiple Sclerosis, maybe they won’t. I just have to believe that by just having it, it doesn’t diminish who I am. If I cease to seek the difference between myself and others, I’m pretty sure I’d be a lot better off.
Because, after all is said and done I bet all members of each world have a lot more in common than we think!
Due to the wrath of Multiple Sclerosis, I left my husband in Silver Spring, Maryland, and temporarily moved in with my parents in Gonzales, Louisiana. I give you the entire scoop in My Story. It was during that stay when I first turned to writing to keep me from completely losing my mind!
I stumbled upon an old journal entry from early 2010. I was fairly surprised to see what I found.
Friday nights are the hardest. I miss Tom. My dad is sleep. Mama is on her PC and/or the phone. She’s probably doing homework with classmates. She’s getting a Master’s degree.
It’s 9:58 Friday night. I’m pretty restless. The odd thing is, if Tom and I were together in any state we would most likely be doing something similar. Him watching TV and me working on this damn laptop. We stopped going out on Friday nights a few years ago. We use to call them “Fun Fridays” Pretty lame. I know.
If I could just drive everything would be better. I know it would. I want to leave this damn house. That is, on my own terms. I want to make it clear that though I complain, I am grateful. “The struggle between Damn and Thanks” is my daily reality. If I could just drive!
The interesting thing is at that very point in my life I was so much more physically disabled than I am now! Can you imagine? I thought the answer to all my problems was driving.
I mentioned leaving the house on my own terms, because I never really wanted to be relegated to my parents home without my husband. I had Multiple Sclerosis to thank for that! When I was in Maryland, Tom and I lived in a third floor walkup apartment building. If I stayed there any longer it would have been a fire hazard at the least and just getting from the apartment to the car had become a 10 minute ordeal. LOL! At the time it just felt like I was being kicked out.
Now, almost two years later I think I have finally gotten over not driving, but I do still feel a bit isolated. But I’m really not!
I think I just like complaining. Smile!
“What we are today comes from our thoughts of yesterday, and our present thoughts build our life of tomorrow: Our life is the creation of our mind.”- Buddha
I really like going to physical therapy in the pool. I can do things in the pool that I can’t normally do…like walk. Besides that, its nice being amongst people who really understand. People who sincerely want to hear the answer to, “How have you been?” They don’t tend to regret asking me the question!
I’ve been thinking about writing this post for a while now, but I just didn’t know if I could do it justice. At therapy I met a handsome young fella who obviously shares multiple sclerosis with me. I often consult other MSers to see how they cope with the drastic changes M.S. thrusts on us. I listen with an open mind. Take what I like and leave the rest. As I’m sure you do as well. I must admit though, I wasn’t ready for his answer. When asked how he copes, with a subtle air of confidence he replied, “MS is the best thing that could have happened to me.”
That rocked me. “Why,” I said. Again he calmly responded with,” It slowed me down.”
Things were much clearer now.
I still didn’t know the context behind his answer, but had a good idea. It sounded like he was leading the kind of fast life that M.S. provided an exit out of. Almost as if he was grateful for it?????
Did it do the same for me?
Of course it did. I just haven’t looked at it that way before. When I was working I was also living in Maryland/DC. Miles away from where I really wanted to be, Louisiana. My career was excellent and the money was great but my profession wasn’t my passion. I spent more time at work than with family and friends. Plus, the cold Northwest temperatures were nearly frightening to this girl from the deep south! I remember calling my supervisor and naively asking questions about driving in the snow! But I do appreciate the doors it did open for my family. I did get to experience an entirely different culture. I was able to live life in “a blue state.” I was able to experience four seasons. Not just hot and hotter here in Louisiana. An author friend of mine, Eric Pete, once compared living in Louisiana to living under someones armpit! The humidity here is atrocious!
So, I’m discovering an entirely new world. Granted I was forced to, but like my friend said, it just may be the best thing that ever happened to me…Well maybe not. That’s a bit much. What I know for sure is that I have the power alter my outlook. I can look for a perspective that enhances me because I have M.S., not in spite of it.
It’s because of M.S. that I write. My passion. It’s because of M.S. that I am surrounded by family here in Louisiana.
And that may be the best thing that ever happenned to me.
As a nurse and an avid reader I am well aware of the downhill trajectory of multiple sclerosis. But it’s an entirely different ballgame when it happens to you.
This particular Saturday had been dubbed as a day for my best friend, her 2 -year-old daughter and me in my new pimped out wheelchair. Well, my friend came to get me around 3ish. She made sure I would be able to propel myself. She literally asked me.(Mistake #1)
I assured her it would be fine. Mistake #2 (I had my fingers crossed.)
First of all any day out with old friends is a big break from my everyday reality of physical therapy and doctor visits. I really wanted to see both of them, but leaving that late in the afternoon in this Louisiana heat would physically wear me out. I knew this. But I carefully neglected to tell my friend for fear of the date being cancelled. I couldn’t pass up an opportunity to shop at the Tanger Outlets with my goddaughter.
So what happened? Picture this. By 6pm my friend was trying to manage me in my chair and the baby in her stroller at the same time! My left arm just checked out. It was if I don’t lift 10lb dumbbells daily.
The wheelchair would roll left. The stroller would go right. We tried letting the baby walk and push her stroller with my help. But that was almost laughable as well. People were just walking by as if this scene was normal. We felt like this was something out of that ABC TV show “What Would You Do?”. I’m not quite sure what I expected them to offer, but we just needed help. It was pure comedy to see us struggling with the shopping bags, the stroller, and the wheelchair as on-lookers walked casually by us.
I knew this could happen. I just looked away and hoped for the best. Really kind of selfish if you think about it. (Mistake #3)
We were past desperate. My friend asked a complete stranger for help with pushing me into a nearby store. I was mortified, the stranger was mortified, but in the end, we needed help and he provided it.
We were troopers!! We both have a great sense of humor and we have been through so much over our 20+ years of friendship that in the end we could laugh about it and make plans to be better equipped for our next outing.
I’m glad I’m right handed!
After a good night’s rest I’m confident it’ll get better.
Next time I’ll start the day earlier, I’ll be honest about my capabilities, and I’ll consider everyone involved.
But if that doesn’t work I’ll give ABC a call.
I just heard someone say, intense grief for a loved one subsides a bit, but the sadness never goes away. A person learns to live with it. I could relate.
I carry sadness when I accompany my husband to the park. I go because he likes me to. I never told him how gloomy it leaves me. It’s odd because on one level I enjoy the serenity of the park, but on another it ignites a personal pity party for one.
So it’s safe to say we (sadness & I) go the park together.
I knew it could be a sticky situation. I use to run 2 to 4 miles there. I sort of compare it to Sam Malone (the recovering alcoholic) from Cheers working/owning his own bar. So, on some level I sit at the picnic table with my laptop loaded with Spanish programs and patiently wait for Tommy. I arrive a tad bit sad. I leave proud and very sweaty. This Louisiana humidity does not discriminate. It’s hot and sticky for everybody!
We go shopping but it’s just not the same. My point of view is obstructed and odd. Plus, if I wheel myself, it’s not for long. It’s just too much for my stamina. Just looking through clothes on a rack is cumbersome. One time I even had an accident in a Marshall’s dressing room! Let’s just say I haven’t been back there since. That was rough for the both of us!
Remember my recumbent bike? Well, sadness would accompany me on the bike, but I’m usually too busy trying to keep my heart rate in my target zone for 10 minutes! The point is that’s my workout! 10 minutes. But for that brief time I put on my headphones, iPod and heart rate monitor and sadness fades to black!
Read my happy comments about Spike Lee in a New Orleans Times-Picayuneinterview