Tag Archives: handicaps

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

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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Filed under Adjusting to NF2, Family Times, Uncategorized

Standing Still

Please read: this is not a post to stir controversy, point fingers in blame or have any affiliation with political parties; it is not my intention to come across in a complaining “woe to me” status or even use this post to vent personal opinions on the subject at hand.

This post is about me and my disease; how curve balls thrown at you in life don’t hit the gutter as they usually do in bowling lanes–but hit you straight on, leaving a knockout of confusion and frustration. Leaving no answers. You know my story: my body is changing, becoming more dependent on others. And as my body continues to change, so does everything else–medicines, insurances and provider policies, and the like. It affects me. It affects my family (my parents as they are my ears on the phone and the brains as we read the paperwork during these situations.) But even my parents don’t understand everything.

“Living with a handicap is not simple,” I said as Mom positioned herself in the driver’s seat after just placing my walker in the trunk for what seemed to be about the thousandth time. The reality is that anyone can say this about life: it is not simple and changes are not easy. You don’t have to face life-threatening or long-term illnesses to affirm this. Speed bumps come in everyone’s life–different time, circumstances. Some we see as we draw near, allowing us to prepare and take caution. Yet others take us by surprise, shock and confusion as they appear to come out of nowhere.

Last week, my life hit a large speed bump. Unexpected, as I am in the midst of changing health insurances due to age, I find I have been dropped from another; Frustrating, there was no warning, no official papers. Confusion at this critical time. And still, as I slowly go over this bump, what seems to be a total mess (which it is)…God is supplying the persons and resources necessary to meet my need. I could not have planned this course, nor do I understand it either. It is a God Room speed bump. His ways are best.

Stand and watch, but do not fight the battle. There, you will watch the Eternal save you, Judah and Jerusalem. Do not fear or worry. Tomorrow, face the army and trust that the Eternal is with you.

2 Chronicles 20:17 (The Voice)

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Filed under Adjusting to NF2, Family Times, Uncategorized