Archive for July, 2011


Pimp My Ride

I have a few minutes to spare between my TV shows.I catch myself sitting here smiling. You should see me. I walk to the mirror to check things out and yep, there it is! A grin from ear to ear!

My life is drastically different, but I’m trying to dig deep and make it work. Some days suck. Some days are at best tolerable. Then, some are good. I think today, I’m excited about the new mountain-bike wheels I ordered for my wheelchair. Funny huh? Wait. I also got a $70 gel cushion for the seat too! I need both to tackle the rugged roads of Magazine Street so we can “shop, wine, dine and relax in the heart of New Orleans”. Then, navigating through the French Quarters is strenuous for any driver and tricky for my bottom. I’m pimping my ride!

Better ride on rough streets, but higher maintenance.

Streets of New Orleans.

As I think back over the years, I’ve come such a mighty long way. I can vividly remember Maryland 2009. Tommy and I leaving the apartment to purchase my very first wheelchair. The chair that I didn’t think I needed. Tommy literally carrying me up/down 3 flights of stairs wasn’t proof enough! It would be my first overt consequence of MS.

Minutes away, we drive to the D.C. medical supply store; Tommy piggybacked me to the entrance. If you haven’t seen me for a while, picture a grown woman being toted down a busy street in our nation’s capital. This was humbling to say the least. I hated that. Grateful, but I hated it. My denial is going to throw my husband’s back out.

We got to the street in D.C. Parked. Paid the meter. Tom carried me half a block and we entered the store. I got down embarrassed and disheveled while Tom was tired and sweaty. I hesitantly browsed several options. It was getting late. We didn’t have much time or energy to bargain shop. So the salesmen and I begin to discuss ordering the chair I really had my eyes on. Perfect.

The shop owner and I turned to face an aggravated Tommy. He calmly gritted his teeth, patted his forehead and nearly grunted, “No, we are getting something T-O-D-A-Y.”

Well, back to the moment at hand, hopefully my wheels will be
here tomorrow.


Walk It Off

This is how it feels when I try to walk

Hubby and I decided to venture to Wendy’s for supper. I intended to order a chicken wrap and a sour cream & chives baked potato.

Against Tom’s better judgment, I managed to convince him this would be a short walk to the car so in turn, I would been more than able to use my walker. The fact that I can aptly use my walker around the house distorts my perception. After a short little banter in the truck on the less than 5-minute drive, we arrived. We never discussed this, but I assumed, we were using the drive-thru. That is why I proposed the walker in the first place. To my surprise he parked in the lot and began to get out of the truck. I knew I couldn’t make it in using only my walker. But of course, trying to prove a point…to whom? I don’t know, maybe myself. I exited the FJ Cruiser. Took two hard-pressed baby steps and conceded I would just stay in the truck. Defeated, embarrassed and misunderstood; my new life.

Somethings Never Change

So, what does any woman do at this point? As he began to walk inside Wendy’s, I called my mother, briefly updated her and her first response was, “Sounds like you were disappointed you couldn’t walk in.” Silence. I muttered, “I never thought about it that way. Okay, he’s coming back. I’ll talk to you later.”

Minutes later hubby and I were home. We ate dinner. I got in the shower.

To be a little more accurate, I was actually on my shower bench. My favorite music was blasting, the door was closed, and I was crying my own river. Yes, that entire episode was about my own inability to walk. It never stops. The sadness disguises itself. How long can one mourn something? This time I let the tears flow freely, I was safe behind closed doors. I didn’t have to pretend. I didn’t have to be strong. I just let myself feel the pain. I recognize the resentment. I love my hubby, but sometimes I probably resent the simple fact that he can walk. How awful! So, I cried.

The shower bench

I never like him to see me cry. I’m confident he can’t hear.
So, I cried. I felt cleansed and soothed by the tears. A small victory now that I think about it that I was able to sit alone with myself and just let go and cry my little eyes out.

An hour later, there’s a knock at the door. He says, “Hey, you alright?”

“I’m fine.”


Open Letter to M.S. (Unfinished)

My unmailed letter to M.S.

I came across this blog entitled Letters to M.S. The blogger encourages readers to send in their authentic angry, tear filled, heart felt compositions. These letters are the naked truth exposed for all to see. As I read them, I have to say the mainstream emotion was anger. There is a saying that posits if one picks up a hot coal with the intent on throwing it at someone (MS), in the process it’s you (the thrower) that ends up getting blistered and burned. I know that it can’t be healthy to carry around such piercing raw rage and hatred or resentment. But there are times that I do. From my reading it sounds like it may be among many other common denominators we MSers share.

Of course this encouraged me to think about my own supposed letter. I actually sat down today with intentions of drafting this letter. But I failed. The emotions (anger and sadness) that the idea said letter conjures up are so heated I can’t even put them to words. The fury is definitely there, but I don’t want to release it to you. Please trust it’s there.
I’m taming it. I know it is there. It will probably always be there. In a way that kind of empowers me? Let me explain. I know the resentment is there, but I don’t allow my attitude to be affected by it. In this way I am in total control of my outlook on things. It is a daily battle to not allow my anger or sadness to discolor my perception, I am in control.

Don't say anything at all.

I acknowledge MS has contaminated the basic aspects of my life.
I know I have lost contact with certain friends and family members at lease in part because of how I have handled its intrusion on my life. There are certain relationships that couldn’t take its strain. I only permit its weight because I have to, others don’t.

I have to let myself feel it (hurt, bitterness, sad) when it happens. My goal is to address these emotions when they appear. Then put them back in their place. Allowing me to get on with what needs to happen. Giving me permission to live and get a little closer to the acceptance I always rant about.
Please remember this is just what gets ME through. I’m no doctor.
I will get to the point at which I can write a letter, but today
I don’t have anything for ya! You know what your parents always said,”If you don’t have anything nice to say….”


What Happened To Jared?

My drug of choice.

The foot long Spicy Italian at Subway is 1,000 calories!

A pound of fat is 3,500 calories. My waist can’t afford to have this scrumptious delight. Unfortunately, it happens to be my sandwich of choice! No wonder I can’t fit my favorite shorts! Thanks to MS, I lead a sedentary life style. According to physicians I should be aware of my caloric intake. Keep in mind since the day I was born, I have been weight conscious. I think I was on diet Similac! Okay some would say, “I’m obsessed with my weight.” I don’t agree with this. Like I said I am weight conscious.

Subway? What happened to Jared? Apparently you have to stick to certain sandwiches. I didn’t get the memo. What is this world coming to? I am so disappointed with myself. I even have that book Eat This, Not That. I have the subsequent app on my phone! In fact I purchased it and learned the truth about my sandwich of choice!

The greatest app ever.

It’s funny to think that with everything I have been through weight issues would even grace the terrain of my brain. Strange Huh? But probably what’s even stranger is that it kind of brings with it a certain degree of comforting familiarity. MS has not affected this weight thing. To me, that’s an entity worth celebrating. That is, as long as I still respect my limitations.

For example water aerobics was cancelled today so I happily went to the gym area instead. This in itself is cute because Tommy has to position my legs on several machines. Afterwards he makes sure I safely get back in the wheelchair. Then he continues to my next selected machine. Sometimes I feel fancy and wear my leotard! Members walk by with their walkers look at me and just smile. (They say MS ages your body so I fit in just fine!) I mentioned earlier how once they were congregated around my walker admiring my fancy cup carrier attachment! I felt like the cool kid in high-school!

By the way Dr. Oz says you shouldn’t be eating a foot long of anything. But all that to say….enough is enough, I’m going on a diet!

"Watch what you eat!"