Tag Archives: living with disabilities

The Room at the Inn

I’m not much help in preparing the bedroom upstairs for my friends visit this weekend. The main problem is that I just can’t get up the stairs…every step says, “Caution!” Like a trail of red flags, so I just don’t enter. Even if I got upstairs, I am useless in changing sheets; So I resolved to help with any needs for cleaning or preparing either on the main floor or the basement (where we will be using my painting studio to decorate with fabric paints the t-shirts for Sunday’s NF Walk.) 🙂

With thoughts of vacation, I couldn’t help but giggle in memory of my hotel experience from the Colorado trip two weeks ago. Last Fall, when I was having weekly PT and OT sessions, my Occupational therapist and I discussed a wide variety of ideas to supplement my needs in the areas where I was physically struggling to perform the daily tasks. She also helped me be aware of resources available for when in time I needed more help. Most of the “when in time” resources seemed irrelevant at the moment, since my physical body overall was doing pretty well.

“When in time” moments started catching up to me around February–I think the first being the shower chair. At first I was embarrassed–even to show people my room was enough, because with the bathroom door open, you can see the raised toilet seat handles. Not your typical bathroom. But I quickly dismissed this notion of blush, because it is when I realized that being independent in this area, I saw a blessing.

My OT mentioned a few other future reference ideas, one being the handicap room in hotels. At that time, I had only purchased the walker for my PT exercises as balancing in my Ankle FootDrop braces was near impossible. Even in February, I only used my cane when I left the house. Now the use of my walker is 99%. I even purchased a second walker to keep for house/back patio/basement use, while the older one is left in the garage for when I leave. The plan has worked smoothly, I think.

There is a first time for everything and the Colorado trip held no exceptions. There was the new way I checked through security, pushed in a wheel chair and now the hotel room. Mom and Dad helped reserve a handicap room, but before one gets to their room, they must get in the hotel. We pull in the parking lot and see the main lobby doors cut off in entrance by the yellow “Caution” tape. Looked more like a crime scene from Law and Order episodes. Mom goes to check-in using the only other door on the building,which is the back entrance.

The room itself is quite nice. The only significant difference I noted between this labeled room and a regular room was the bathroom. The doorway allowed room for a walker or wheelchair to easily enter and maneuver around. There was a handle attached to the wall by the toilet, along with a telephone. I suppose if you fall off the toilet, the assumption is that you can reach the telephone to call for help. The shower “chair” was what made the whole first-use-of-handicap-room experience worth it (in memories sake)!

In conquering difficult situations from the eye and body of a disabled person, I often mutter to myself (sometimes probably louder than I should) the fact that if TLC ever wanted a new reality show that I would volunteer; a show following individuals with disabilities and how they overcome the obstacles they face daily…what ones make them cringe, cry, laugh. What situations are easy or ones that are absurd. Most importantly, how it affects those closest to them. Anywhere I travel, someone has to retrieve or pack my walker from the trunk; I can get locked in public restroom stalls, because my hands can’t get the knob to open; or retrieving items at the grocery store often requires a helping hand. Mom and I like to swiftly shop our lists separate, so the last time I was choosing a coffee creamer, I asked a kid looking at the sour cream next to me if he wouldn’t mind helping me get the bottle, as I was nervous to drop and have it crack, then spill (just from previous experience at home.)

It is in this “reality show” thinking that I had to laugh. I envisioned the crew filming me as I show the viewers how the shower is set. It was like camping. At the one end, the shower is the standard shower head (but you could detach it)–the other end is “the shower chair.” Now, I can’t complain, because being able to sit was appreciated; however, this wooden beam of a chair that you folded up and down (but was too heavy for me to fold up upon wanting to get out of the shower) was right in the way of how you normally exit a bathtub style shower. I was barely able to keep a grip on the handles and was thankful not to have fallen completely out. The next shower, I had to have Mom fold the beam up for me before I exited.

I understand that some hotels are older, but in the newer hotels–like the one we stayed in the night before our fight back–I do not understand why there has been no consideration for the shower set-up in handicap rooms. One would think that a walk-in style shower with a sturdy set chair attached would be more efficient for those who cannot get themselves in a bathtub shower. The thought just crossed my mind that weekend as the first hotel gave me much more insight to think of as well: if you’re remodeling the lobby, please make your residents aware that there are missing tiles on the floor when they come in after two days of no continental breakfast to find the place empty of chairs or tables. We used my walker to transport the served cereal back to our room. 🙂

I may sound on a rant but I don’t mean for this to be so. I just want to make people aware that life brings unseen hurdles in your path and sometimes one needs a helping hand for safety–hence the handicap ramp in the hotel parking lot. Quite frankly, I would not have even called it a ramp, but a slab of steep, skinny, sloped concrete. It was only wide enough for my walker, so if I were using a wheelchair, I would probably have felt safer just hopping the curb. There was no hand railing either; I wanted to quote Marlin from Finding Nemo: 

Bob: Hey, you’re doing pretty well for a first-timer.

Marlin: Well, you can’t hold on to them forever, can you?

Bill: You know I had a tough time when my oldest went out to the drop off.

Marlin: They’ve just got to grow up som – THE DROP OFF? THEY’RE GOING TO THE DROP OFF? WHAT ARE YOU, INSANE? WHY DON’T WE FRY THEM UP NOW AND SERVE THEM WITH CHIPS?

Bob: Hey Marty, calm down.

Marlin: Don’t tell me to be calm, pony boy.

Bob: Pony boy?

Bill: You know for a clownfish, he really isn’t that funny

Ted: Pity

🙂

Never before my own handicaps and disabilities did I even think of these situations or how an individual lives each day overcoming even the smallest of difficulties. I’m not suggesting that life be easy, because it’s not and experiencing scenarios such as these is very humbling. It keeps me aware of my surroundings and ever thankful for the help in time of deepest need.

*Finding Nemo. (2003). http://www.imdb.com/title/tt0266543/quotes

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Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

Road or Air?

Road trips. Yeah, I just laughed out loud at the memories. If I were an author, I could write children’s novels on the subject using my family’s experiences and adventures. As a family, we took many road trips especially in the younger years–even when Marcia was in a car seat. I don’t know how my parents survived.

My extended family circle is big. I am extremely blessed. When my Dad felt led by the Lord to move West (Colorado) for work, my parents made every effort to make certain that we kept in touch with all three sides of the family. Because of this, road trips took different directions: one year, we would go northeast states in a loop, squeezing in as many family/friends as we could in the short period of vacation time; the next vacation, we would go in the opposite direction doing the same pattern. Road trips also gave an opportunity to visit historical places and other tourism specialties in different cities.

In our suburban, there was this unwritten form of conduct for the seating. Because Melissa and I didn’t get carsick, we were always smashed in the backseat. Melissa’s long legs could only handle so much of the no leg room and for myself, my pet-peeve was not being able to hear the music. Literally the example: No one is talking, so I ask, “Can we turn up the music, please?” Mom turns up the volume. As I have now broke the silence, now everyone is talking or bickering between the middle/backseat–Mom turns down the music. Unfortunately, the only music we never wanted to ask to be turned up was Dad’s oldies. I finally learned to appreciate them (before I went deaf.)

Now, the backseat was responsible for getting the snacks, packed lunch or Dad’s Diet Pepsi from the cooler. Being efficient packers, the cooler always landed in the farthest back of the trunk, in which one had to unbuckle their seat belt to practically climb over the pillows and duffle bags to get in the box. Somehow, someone upfront was always hungry when the backseat persons were sleeping. The middle seat was responsible for the trash bag. I am not sure why this was a big deal, but most of the seat bickering was based on the trash bag, or the fact that they had controls for the air vents, their windows rolled down and they had the best seats when we played the Alphabet game (of course, Dad driving had the best seat of us all!)

When we started traveling by plane, I liked the convenience of getting to our destination quicker and always tried to act more mature when we sisters got to sit by ourselves apart from Mom and Dad. The only real code of conduct our family has for air travel is that we get to the airport a prompt two hours early to check in our luggage and get through security. Traveling the air was a breeze, until this time my ticket officially labeled me as a disabled passenger.

The disabled label does not have any real grasp on my mentality…it used to irritate me significantly, but now it is something that I have come to acknowledge. My disabilities are not always visible, which is why no one fully understands the amount of physical pains, pressures and problems that my body endures. I don’t blog about this subject–even though it is one of the biggest physical challenges I daily encounter–but to understand the significance of my fear for this flight, you must understand that like any other area in my body in which the tumors destroy the nerves–there is disaster in waiting. In this instance, it is my bowels. I have little to no control of them or their patterns. I often feel controlled in fear of having accidents; no 26-year-old should be having accidents, but it has happened. It’s humiliating.

So as I started preparing for the flight to Colorado, I felt fear take a strong grip over me and I asked a few close friends to join 1me in prayer about this–I needed peace. Our flight out left at 7am, so in code, we arrived to the airport around 5:15am for check-in and security. We checked in our two suitcases, as well as my walker. I was then pushed through security and only stood (Mom holding one of my arms to keep me balanced) when they performed the security pat-down. Passing the requirements, we headed to our gate.

You can tell that it was our first time traveling in this manner, because when we arrived at our gate, we said our thank you to the girl who pushed my chair and then she left to go help another wheeled chair passenger. When they joined us, Mom and I saw the lady tip the employee. As she left, I looked at Mom and she asked exactly what I was thinking: “Were we supposed to tip her?” We looked in our wallets and resolved to use what few dollars we had to tip any others that help in such a manner. 🙂

Being a disabled passenger flying Southwest airlines is sort of like having First-class seating. I was wheeled to the plane door, then helped to the seats…Mom and I decided just to sit the first row. There is a first time for everything. Still nervous for the flight, Mom gives me reassurance prep-talk and soon the plane is running down the airstrip. I remember take-off. Then sleep found me. We landed in Denver and I was one of the first few of the plane, once again pushed in a wheel chair to baggage claim, although this time they buckled me in…which I found quite hilarious! It made sense, however, once we rode on the concourse terminal train. I have never felt so much freedom at the sight of my walker waiting for me at baggage claim!

In both my flights, I had to completely surrender myself and trust in God’s protection. It was NOT easy! But I saw answered prayer; I lived answered prayer. On the last day of meeting friends, I had the chance to see my interpreter from CCU. We were discussing this flight story and I told her that I had been challenged by the experience. How often it is that I say the simple phrase, “I’m praying for you.” Then I forget or say it once quickly, then get busy and move on with life.

It humbles me to know that I have prayer warriors who daily lift up my name to God; they present my personal, detailed requests…as well as the need for comfort and strength. Prayer in my life, as of late, has seemed to be an unwritten code of conduct–very formal, lacking zeal. Like the Disciples (Luke 11:1-4), I often in question say, “Teach me to pray.” And I know He will answer.

The function of prayer is not to influence God, but rather to change the nature of the one who prays.

Soren Kierkegaard

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Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

The Open Door

“What’s the point of having a handicap sign on the door, if there is no handicap button to open the door?” My question was intended for Mom as we made our way into a store. A man nearing the entrance at the same time may have heard my blunt, yet honest, question as he held open the first of the double door entryway. I smiled and said, “Thanks!” as I passed on the way inside.

A situation such as this really is not something that is one to dwell on in frustration. I think I simply asked my question, because I am seeing this same concept more often now that I use and depend on my walker in public. But maybe that is where my frustration sometimes comes from–I think the concept of having a sign but no modem is misleading and I want to voice my opinion about it very loudly.

And this is where my thoughts collide. It is not easy for me to be disabled; sometimes my frustrations at my physical state (slowness due to hands, upset stomach, the fact that I can’t go downstairs by myself anymore or get myself outside either) causes me to want to voice my opinions strongly about the unfairness of life; (I do that anyway when it concerns health insurance woes.) This way of thinking endangers me in selfishness…that things should be as I want them to be.

And so I think of doors in an analogy of my life. Not all closed doors are meant to frustrate; not all open doors are meant for me to walk through; some doors will have misleading signs; some doors will not open on their own, but will take physical effort on my part. Discerning the right door to enter is dependent on the door to my heart–“Guard your heart above all else, for it determines the course of your life.” ~Proverbs 4:23, NLT

Doors of Greece. Pictures taken by Mel 🙂 (Greece trip, May 2010)

Myceneans Mycenaean tomb

Athens Athens

Greece0075 Phillipi

Philippi Greece0002 Ruins of the church building, Phillipi

Philippi Greece0001 Phillipi

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Cute Shoes

If you recall, I have this knack for cute shoes. I think it could be partially genetic–a family trait that naturally flows throughout my genes, much like my love of coffee and good reads. The artistic eye for cute shoes is also a key conversation starter with strangers. “Cute shoes!” I say honestly and enthusiastically while waiting in long, slow lines at the store. Time suddenly seems to quicken its pace and before you know it, your engaged conversation is ending.

Even though this intrigue of fashion is still very much part of how I complete my wardrobe for the day, it is not as much of an importance of appearance anymore as it is sturdy convenience–although at this point in time, I can argue the fact that it doesn’t matter what is on my feet…I am still prone to ankle twists, bad balance and falling: thus, I still own a pair of cute slip-on shoes that I save for special occasions, just like my bag of make-up. (Secret! 😉 )

Because I realize that my walking is declining and my bones are fragile (it is a miracle that I am even walking, let alone have not broken any bones during my falling episodes), I am trying to take the appropriate steps in safety by wearing regular shoes–except that I can’t physically tie shoes due to my hand conditions. My physical therapist had mentioned last Fall during one of my PT sessions that there was a shoe and leather repair store, in which she recommended to her patients. This store specializes in shoe adjustments as well as repairs. My adjustments would be removing the shoe laces and getting Velcro straps.

“Sounds old-timer fashion,” my first thoughts concluded. (No offense meant to my elderly readers.) But when I received my pair of tennis shoes back, I actually think that they are kind of cute. 🙂

DSCN3430

 

Remember how exciting it was as a kid when you first learned how to tie your own shoes? My Velcro straps enabled me to re-experience that simple childhood joy.

The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights. Habakkuk 3:19, NLT

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Everything

When I first started figuring out how my new Nook tablet works, I–very cautiously as not to outspend myself–enjoyed uploading a few books to my personal library. I also subscribed to a year’s reading of the magazine, Reader’s Digest, and accessed a few apps for more readings and entertainment.

It was while reading the latest edition of the Reader’s Digest that I came across a single picture page titled, “Faces of America,” by Glenn Glasser. The picture is of an artist, Joe Beene. I know nothing of Joe Beene except for what the picture reveals–he is quadriplegic.

In a sun-room style area, the yellow walls are brightly lit from the many windows and glass door on the left. The center focus of the picture, you see the artist at work. Joe is not just any artist…he is a painter. And in the picture, he is painting by mouth. The picture is a side view, so you cannot see the painting straight forward, but even from the side angle…one can see an extraordinary, vibrantly-colored painting!

There is no article, no details, no explanations. There is one question:

What was the darkest time of your life?

Joe Beene: When I had everything.

(Reader’s Digest. April 2014. page 33.)

And I sat thinking about this simple statement again as I finished my morning coffee–Could I say the same?

This is the time in your life when you must learn to let go: of loved ones, of possessions, of control. In order to let go of something that is precious to you, you need to rest in My Presence, where you are complete. Take time to bask in the Light of My Love. As you relax more and more, your grasping hand gradually opens up, releasing your prized possession into My care.

Young, Sarah. Jesus Calling: Enjoying Peace in His Presence. Nashville: (Thomas Nelson, 2004.) March 24 entry.

 

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Filed under Adjusting to NF2, Books and Movies, Paintings, Uncategorized

My Choice

This may seem like a sudden decision (which it is); but it has been long-time coming. It was one of the hardest choices I have yet had to make, but this time it was my choice and that alone makes me feel like an independent person.  I have decided that for my safety and the safety of others, I am finished driving.

This decision is not a result of just one physical area, but a combination of many since February: increasing numbness in right hand and especially weakness in the thumb, upper arm strength, weakening right ankle, my balance worsening, and overall energy after hoisting my walker in and out of the backseat while running errands. It is not that I am a bad driver–but God used one weekend to show me that I should consider my driving limits before a worst case scenario occurs. If He hadn’t intervened, my body and mind would still be at conflict with each other about this situation. I knew this choice would be coming, yet I wanted to go as long as possible before I had to finalize the word.

Now what? I am not sure. Ten years of driving, owning a car for five. Like my short-lived apartment experience, I have many memories. Many stories of me and my car. I am now just shifting driver seats to what I do best anyway: co-pilot; but it will take time to adjust to the transition.

For everything there is a season, and a time for every matter under heaven. Ecclesiastes 3:1, ESV

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In the Storm

I’m just going to be honest here…this weekend has been rough. Like a sea of emotions, mixing memories of the past with the present times and having to face the reality of potential changes in the near future. Collide them together and the waves crash into the boat. And it feels as though I have been thrown overboard and I get physically sick. Weak and vulnerable, I feel my courage start to fade.

I am in the middle of the storm. A voice calls out,”Take courage! It is I. Do not be afraid.” (Matthew 14: 22-33)

He bids me come…but I am fearful of the waters, the waves–I am fearful of letting go of the sinking ship that is currently keeping me afloat. I must decide. Do I wait until the boat is no more or do I release my grip while it is still in sight? The decision is mine. How long I remain at stalemate is unknown.

Yet in the storm, I see Him waiting. He has not abandoned me. I cry out; I plead for strength, discernment, hope.

Reach down for me, True God; deliver me.
The waters have risen to my neck; I am going down!
My feet are swallowed in this murky bog;
I am sinking—there is no sturdy ground.
I am in the deep;
the floods are crashing in!
I am weary of howling;
my throat is scratched dry.

But, Eternal One, I just pray the time is right
that You would hear me. And, True God,
because You are enduring love, that You would answer.
In Your faithfulness, please, save me.

Psalm 69: 1-3, 13 (The Voice)

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